History

Sunday, February 25, 2007 9:08 PM CST

Happy 9th Birthday Connor!

Today marks 3 years and a week that Connor has been in heaven looking over us and being our guardian angel. It is his 4th birthday he has spent in heaven, since he passed away a week before his 6th birthday. We are ever grateful for the early surprise 6th birthday party we gave him just a couple of weeks before we lost him! It was a great gathering of friends and family at Chuck E.Cheese's in South St. Paul. The manager at that store was extremely kind. After finding out the purpose of this birthday, the store donated all of the food and provided free game tokens for everyone there.

Sorry it has been so long since we have updated the site.
In September we participated again in "Light The Night" at Lake Phalen. "Team Connor" was once again one of the biggest teams, and raised alot of money for the Leukemia and Lymphoma Society. On June 22nd we will have a "Team Connor" for the RELAY FOR LIFE of Woodbury, which raises money for the American Cancer Society. Another endeavor that Tammy may take on this year is a run at the "Woman of the Year" for the Leukemia and Lymphoma Society of Minnesota. She is is currently evaluating some events to raise money for that. Let us know if you have any great ideas. Also, don't forget to listen to KS95 this Thursday-Saturday fot their annual KS95 for KIDS Radiothon, benefitting Children's Cancer Research Fund and Gillette Children's Hospital. The last couple of years they have played an audio interview of Connor's story put to music. They do their live broadcast during this event at Ridgedale Mall. They also have a Silent Auction on line with some great items.

Many of you may have heard us talk about Connor's "Radiation Buddy" Brad Pint in the past. He was recently asked to write about his story for the Leukemia and Lymphoma Societies newsletter. I thought it was great, and it discusses his experiences meeting Connor. Here is what it said:

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November 2006

Dear Friends of the Leukemia & Lymphoma Society:

Do you believe things happen for a reason? I do, although sometimes it’s not clear right away, but I believe we eventually find out. This is the way I feel about February 2003, after getting the news I had multiple myeloma, a blood cancer that primarily strikes people in their 60s and 70s. I was 38 when I was diagnosed, much to the surprise of many in the medical community. After getting over the shock I had cancer, I decided to focus my energy on beating this beast.
I remember clearly telling my wife; “Okay I have cancer, now how are we going to beat this?” I was young, and had a lovely wife and three wonderful children that needed a dad, so it was time to be aggressive. Within days of my diagnosis, I began a four-month regiment of a chemo cocktail, had my stem cells harvested, and underwent three days (10 minutes twice a day) of total body radiation.

I’ll never forget the doctor telling me that the goal with the high powered chemo and total body radiation was to bring me to the edge of death and then bring me back with my stem cell transplant. Without the stem cells, I would be dead in a matter of days.

An amazing thing happened to me during my radiation treatments; I met someone who changed my life. His name was Connor Stokes, or as I called him – “My Radiation Buddy.” Connor and I had a few things in common – bald heads, white Nike booty socks, and we were both getting total body radiation treatments in preparation for our stem cell transplants. Connor was battling a relapse of the leukemia he had been diagnosed with when he was 2 years old. He was someone who spent most of his short life in hospitals and doctors offices, yet Connor still had such a positive attitude and zest for life. His strength, his laughter and his desire to just be a little boy really impacted me and everyone that knew him. Sadly, shortly after receiving his transplant, Connor lost his battle to leukemia while lying in his father’s arms. There’s not a day that goes by that I don’t think about Angel Connor. Cancer for me has been a blessing in an odd sort of way. Without my diagnosis, I would have never met Connor (and his family and friends). Without my diagnosis, I probably wouldn’t have been introduced to The Leukemia and Lymphoma Society and all the wonderful people associated with it. Things do happen for a reason.

The Leukemia & Lymphoma Society was there for me when I was first diagnosed, providing me with information about multiple myeloma, what I could expect and how they could help me. It was wonderful. It was also comforting to know there were programs and people available through the Society that could help me through these trying times. About a year after my transplant, I started my journey to do whatever I could to help find a cure for blood cancers. So I began participating in events such as the Light The Night Walk for Team Connor. I also participated in the Man & Woman of the Year contest. The efforts of everyone involved produced wonderful results, but it’s not nearly enough.

That’s why I‘m personally asking you to help by making a potentially life saving financial contribution to The Leukemia & Lymphoma
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Last week for work I found myself having to help out at United Hospital, which is attatched to Children's Hospital of St. Paul. While there, I ran into a couple of Connor's old Oncologists (Dr's Messinger & Slomany). I hadn't seen either one of them since Connor's funeral. It was great to see them, and they were eager to hear how we were doing. They offered again to meet with us if we wanted, to assure us that we made all the right decisions for Connor's therapies, and that no mistakes were made. They were glad that we were at peace with how things played out. The only discouraging thing about talking to them was hearing about how busy they are. They have never been this busy in their careers, and the kids just keep coming in. I just hate thinking about what these kids and their families are going to have to endure. Based on our experience, I believe Tammy and I will forever be involved in various fund raising events until a cure for cancer is finally found.

We have been keeping busy chasing Zachary Connor around. He is now a big 2 year old! He turned 2 on February 13th. He celebrated a number a times with different friends and family. His favorite thing to play with continues to be cars. He also likes to "help me?" shovel when it snows. Johnny is now a big 5th grader! He kept us busy with football this fall, and now hockey this winter. He plans on playing in a spring hockey league as he waits for the baseball season to begin. He is doing great, and still talks about Connor often.

Thank you all for checking in on us and remembering Connor. It means a lot to us every time we see that someone else has visted Connor's site.

Monday, September 25, 2006 11:33 AM CDT

Where did the summer go?

We have had a very busy summer...chasing wild-man Zachary...Johnny's baseball season, football and hockey camps, which has now turned into the start of school and his football season. I hope everyone enjoyed their summers as much as we did.

Today marks the three year anniversary of Connor coming home in a limo after his bone marrow transplant. What a great day that was, filled with the hope of finally putting his cancer behind us.

On June 16th we participated in Brad Pint's Prom, which was one of his planned events to raise money for his part in the chase of the "Man of the Year Award" for the Leukemia and Lymphoma Society of Minnesota. We had a great time! We also got to meet Abby Thom, who is a beautiful little girl who is winning her battle against leukemia, and is the reigning Leukemia and Lymphoma Society's "Girl of the Year". She and her father were named King and Queen of the Prom! Brad plans on continuing this event on an annual basis to continue the fun, as well as the opportunity to raise money for a great cause.

On June 22nd, Tammy and I attended the Leukemia and Lymphoma Society's Year End Gala at St. Anthony Main. The highlight was the naming of the Man and Woman of the Year. Brad Pint raised over $13,000 in just ten weeks for this contest, but unfortunately fell just a bit short of winning. There were 5 men and 5 women up for the award, and collectively they rose over $95,000!

The next event was June 24th, when we participated in the "Time to Fly" walk/run for the Children's Cancer Research Fund. The day started out looking like it was going to storm, but it quickly cleared and the kids had a great time participating in the 1 & 2 K races.

Save the date! Saturday September 30th:
This is the date of the "Light the Night" walk at Lake Phalen. The festivities (food and entertainment)begin at 5:30, with the walk starting at 7pm. If you are interested in joining "Team Connor" give us a call or sign up at www.lightthenight.org, and search for Team Connor to register. If you have been on the team in the past, please wear one of your Team Connor T-shirts. If you are joining us for the first time, give us a call and we will bring some extra T-shirts.

Why should we continue to raise money for childhood cancers? Because leukemia claims more lives in children under the age of 20 than any other disease. Because every 5 minutes someone is diagnosed with a blood cancer. Because every 10 minutes, someone loses that fight.

Advances in Treatments:
PEG-Aspargase is now approved for the first line treatment for leukemia protocols, not just those unable tolerate L-Aspargase. What does this mean? When Connor went through his initial induction treatments, it meant that he received 21 painful shots of L-Aspargase in the thigh. This was in addition to all the other harsh chemo's he had to take. With this new PEG-Aspargase, he would have only had to receive 3 shots of this longer acting form. While not a cure, these baby steps mean a lot to the tolerability of therapy in the lives of the kids going through it. Not to mention a decreased chance of complications from errors. I will never forget the day of Connor's 21st shot of L-Aspargase. It was an exciting day for Connor. A milestone of getting through this difficult phase of treatment. Unfortunately for Connor, the nurse gave him a shot of the wrong medication in his thigh. Instead of the L-Aspargase, they shot the very dangerous drug Cytoxin into his leg. They immediately had to give him 11 more shots surrounding the original shot, of an anecdote to work against the Cytoxin so it wouldn't destroy and eat away at the muscle in his leg. This exciting day for Connor turned into quite a traumatic one! This story goes to show that these little advances in care may not hit big headlines because they are not a cure, but it is a potentially very big advancement to those going through it.

Thanks for checking in on Connor's Website. Every visitor logged on the website helps us by knowing that Connor has not been forgotten.

Sunday, May 14, 2006 9:36 PM CDT

Happy Mother's Day! Thank you for checking back on Connor's website.

The KS95 Radiothon was a big success! They raised almost 1 million dollars for Children's Cancer Research Group and Gillette Children's Hospital. Speaking of Gillette, Johnny just had knee surgery there last Thursday to clean up some excess cartilage he had in his right knee. They were a wonderful to us and Johnny. We are lucky to have them in our community.

The next event that we will be participating in is Children's Cancer Research Fund's "Time to Fly Race" on June 24th. The event has a 5K walk/run, a 10K run, and either a 1K or 2K run for kids. We have participated in this event the last couple of years. It is a very fun event that takes place on Harriet Island in St. Paul. My sister Eileen actually won the event in her age group (I won't disclose the age bracket)a couple of years ago. If anyone is interested, you can get more information at www.childrenscancer.org , and click on events.

I recently received an e-mail with a Butterfly game from Children's Cancer Research Fund. You should try it out at http://game.childrenscancer.org . It is a unique way of providing an analogy for the success and failure of treating kids with cancer.

Toward the end of August, almost three years ago, Connor was in the hospital at Fairview University for his bone marrow transplant. One of the steps of preparing to receive his chord blood transplant was to receive full body radiation twice a day for almost a week. As a parent, it was hard to watch as they taped his feet down on the table, and then taped his hands and arms in a strategically placed position to protect his lungs before they blasted him with radiation. The only thing that made it easier for us was Connor's positive attitude going into these treatments. Connor was always comfortable going down to the dingy basement of the hospital for these treatments, because he knew he was going to be able to see his new friend there. You see, Connor quickly established a friendship with another patient who was going through a transplant and also required radiation therapy. His new friend, Brad Pint, had been diagnosed with Multiple Myeloma. He was not another child, but an adult about Connor's parents age, who had kids of his own. Never minding his own predicament, Brad always had time for Connor, and affectionately became known as Connor's "Radiation Buddy". This friendship lasted past the radiation treatments, and continued with various hospital visits and birthday parties. Many of you may have met him at Connor's Surprise 6th birthday party at Chuckie Cheese, or Connor's funeral, or possibly at a Light the Night event. Brad's health fortunately continues to improve, and even though he is busy working and spending time with his family, he takes time to be actively involved in the Leukemia and Lymphoma Society. This year, he has been tasked to raise the most money of various nominees by June 19th. If he does so, he will become the Minnesota's Chapter of the Leukemia and Lymphoma Society's "Man of the Year"! To raise money, he is planning a golf tournament, a dance, and will participate in a Black Tie Dinner. To learn more about him and how to help him win this award, please visit his website @ www.caringbridge.org/mn/bradpint ; or if you are willing to just donate some money, please visit his donation site @ http://www.active.com/donate/mnmwoy06/bradpint . I couldn't think of a better person to win this award. Check out the picture I added of Connor and Brad during one of the hospital visits they shared together.

Thanks again for stopping by and remembering Connor!

John, Tammy, Johnny, Angel Connor, and Zachary Stokes

Sunday, February 19, 2006 8:46 PM CST

Thank you for remembering and checking in with us. I apologize for not writing for such a long time. The main purpose of this website was to keep everyone informed of Connor's progress. It unfortunately turned into a review of his life, with updates everyone once in a while to discuss how his life has influenced what we do today.

Today sadly marks two years now since we lost Connor. With the continued passing of time, we fear that we may be losing some of the specifics regarding our memories of Connor. We talk about him all the time, and watch old home movies to keep his memory fresh. I would also have to admit that 2 years, although a long period of time, doesn't shield you from the pain of losing a child. This makes you think of the old saying "Time Heals the Pain", and makes you wonder what the term "heals" means. If it means the ability to accept and cope with it, I think we have done a pretty good job. We could have all individually broken down, or allowed our family to be torn apart. I am relieved to say that the opposite has happened. This strange fate we were forced to deal with has brought our family closer. Experiencing how fragile life can be has made us much better parents to Johnny and Zachary. I definitely have to thank all of you for all of your support that has given us the strength to carry on.

While it may seem a bit strange, we actually had Zachary's 1 year birthday party today (He actually turned 1 on Feb 13th). We ended up celebrating this today based on conflicts of schedules preventing us getting together sooner. It turned out to be a very nice diversion to the otherwise unpleasant anniversary of losing Connor. A few of Connor's old friends were at Zachary's party, which was very nice to realize that our relationships with most of his friends families have not changed. Zachary had a great day, and loves it when people sing Happy Birthday to him!Connor's Birthday is coming up next Saturday, February 25th. He would have been 8 years old. I am sure that we will honor him by ordering a pepperoni pizza, as I am sure he would have wanted.

KS95 for Kids Radiothon is coming up again the weekend of March 3-5th. All of the money raised goes to Children's Cancer Research Fund, and Gillette's Children's Hospital. Listen and support if you can! All of the money stays local! We plan on volunteering on the pledge phones at some point over the weekend.

After Connor's death, friends and family donated money to the Children's Hospitals of St. Paul and Minneapolis. This donation gave us the opportunity to design and place a memorial tile in each of the hospitals. The tiles are now completed, and we plan on placing them in the hospitals some time this week in time for Connor's birthday. These tiles will not only provide a great memorial to Connor, but the donations have gone to two great hospitals that helped us a lot over the years.

Connor's old "Radiation Buddy" Brad Pint has been nominated for the Leukemia and Lymphoma's Society's "Man of the Year"! It couldn't go to a better man! Please visit his website at: www.caringbridge.org/mn/bradpint to support him and to help him to win the award.

My sister Nancy, as many of you know, has been battling breast cancer the last year and half. She recently had some more scans done, and she received the great news that everything right now is "clean"! To keep up with her story, please visit her website at: www.caringbridge.org/il/nancyscislowski.

This has been a busy winter for us. Johnny has been very busy with his squirt hockey. It has been a very fun year with great kids on the team. Zachary, as you can imagine, also keeps us on our toes. He just turned one, but he has already been walking for 5-6 weeks! Zachary at this point seems to be a 50/50 mix of Johnny and Connor.

While stopping by the cemetary today to honor Connor's two year anniversary, I came across a great poem that was on a stone that my mother had placed on Connor's headstone. It read, "Perhaps they are not stars in the sky, but rather openings where our loved ones shine down to let us know they are happy." This offers a very pleasant thought that I will remember everytime I see a star. Let's hope for some clear nights!

Thanks again for remembering Connor, and for taking the time to visit his website.

Sunday, November 27, 2005 8:53 PM CST

Thank you for checking in on Connor’s Website. I apologize for it taking so long for an update. I hope you all had a wonderful Thanksgiving with your families.

We took a family vacation to Disney World for a week in October. We went with two other families from the neighborhood and had a great time. We created a lot of new memories, but there was no way to separate from the memories of Connor. The previous two trips to Disney had been highly focused on Connor. The first one was our Make-A-Wish trip the first year he was diagnosed. The second trip was in December of 2003 when we took one last trip there after learning that Connor was terminal. It is still amazing to me how dynamic Connor was, and that no matter where we were in any of the parks we visited, the memories of Connor were vivid. Seeing other kids wearing the special Give Kids the World buttons made we want to stop them and ask them their stories. (These buttons are given to kids who were awarded trips by organizations such as Make-A-Wish. When in the Disney or Universal Parks, they are given priority such as not having to wait in any lines. Give Kids the World is the resort that families awarded these trips stay. For more info on this great facility, stop by there web-site at GKTW.Org. .) The facial responses of Connor after each of the rides played through my mind after each ride. This was especially true after the Pirates of the Caribbean ride. After the ride you descend into a shop that sells all sorts of memorabilia of that ride. Tammy immediately spotted the same T-shirt that Connor had purchased on our previous trip. We thought of getting one for Zachary, but quickly remembered that it would not be a good idea since it was also the shirt he was wore to bed on the night he passed away. While there we stopped by Give Kids the World to visit, and remember what a wonderful facility it is. This trip will always be remembered as the one that we were able to get out of Florida just before Hurricane Wilma hit. We were lucky that it stalled out over Mexico, giving us an additional few days of nice weather in Florida. We left on Saturday afternoon when it just started to rain, plenty of time before it hit with full force on that Monday morning.

As I had mentioned in an earlier update, Lorali Ooten (a woman I know through work), completed her first marathon in San Francisco. She ran in honor of Connor for the Team in Training for the Leukemia and Lymphoma Society. She raised over $3,500 herself, and the Leukemia and Lymphoma Society’s Team in Training raised $14,000,000 on that race alone! Another woman I work with, Jill Roeller, is running her first marathon this December in honor of Connor. She is on the Team in Training as well. If you would like to support her, please stop by her website at http://www.active.com/donate/tntmn.JRoelle.

Tammy has started volunteering for the Children’s Cancer Research Fund (CCRF). Her role will be to stop by business’s who are looking at various organizations to partner with for their charitable donations. She is there to tell the story of Connor, and how CCRF helps families like ours with support and research. Her first business ended up being a bank right here in Woodbury.

Johnny continues to keep us busy playing hockey. He always tries to get #18 for his jerseys, because that was Connor’s last number. That number was not available so he had to settle for Marion Gaborik’s #10. Not a bad second choice! He was thrilled to get his first goal of the year in the teams second scrimmage as he was battling for a loose puck in front of the net. He decided not to play basketball this year because hockey alone is busy enough. After the season is over, he will be undergoing some knee surgery on his right knee to correct his discoid meniscus. If you ever want to be grossed out, ask him to show you how his knee snaps every time he bends and then straightens it!

Zachary is an eating, crawling, standing machine! His mobility is unbelievable for a 9 month old. He likes doing laps, walking around our coffee table. He keeps his balance with just one hand on the table. One time he even ran to the other end to get something he was excited about. Looking and watching Zachary learn about the world keeps reminding me of the innocence of childhood. Everything in the world is good for them, and they don’t yet know the need to fear that bad things can occur. Johnny and Connor lost their childhood innocence on December 6, 2000. Johnny was just 5, and Connor was almost 3 when he was diagnosed with ALL on that terrible day. I look forward to watching Zachary grow and live with innocence much longer than his brothers had the opportunity to do.

Tonight, to end the long Thanksgiving weekend, we sat down to watch some old home movies. Johnny found a tape that was not titled, so we thought we would just throw it in to see what was on the tape. What a great surprise to find that it was from Connor’s last summer with us. It included him jumping off the dock, swimming, and tubing at the lake. It was a lot of fun to hear his laugh again! It also included Connor’s last baseball game of his season when he got his trophy! It was great to see him joking around with his baseball buddies as the posed for the end of the season pictures. It also showed him playing with his friends at home, and running through the sprinkler. It was a great tape to find, and we immediately labeled it and will store it in a special place.

Thank you for taking the time to remember Connor and for visiting his website. I hope you all have a wonderful Holiday Season.

Sunday, September 25, 2005 9:28 PM CDT

Today marks the second anniversary of Connor coming home in his limo after spending 6 weeks in his hospital room for his bone marrow transplant. We have a picture on our refrigerator of Connor in the limo that day. He has a grin from ear to ear, and it would be difficult to ever see that depth of joy in a child's eye ever again. He earned his limo ride home, and he was about to be able to see his friends for the first time in 6 weeks! It was great day of complete joy and nervous hope for a healthy future.

This fall has been very busy. Johnny has started 4th grade and his second year of tackle football. The weekend of September 10th, Johnny was asked to be a model for a fund raiser for Children's Cancer Research Fund. It was held in an outdoor tent at Hoigaard's, with Belinda Jensen as the emcee. Johnny thought it was a lot of fun! The only drawback was that he was modeling winter jackets and it was around 90 degrees outside. We also went to a Woodbury High School football game a couple of weeks ago. The half time show was scrimmages of all of the 2nd grade flag football teams. It was a bittersweet experience. Seeing all of Connor's old friends that we hadn't seen in a while was nice, but once again recognizing how fun it would have been to watch Connor play that night underthe lights in front of a High School crowd also made it difficult to watch.

Last night's Light The Night fund raiser was a great success. Team Connor had over 70 participants and raised over $2500 for The Leukemia and Lymphoma Society. A HUGE THANK YOU goes out to everyone who came out to walk with us! It means a lot to us that you have not forgotten Connor, and you are still willing to take time out of your busy lives to honor him during this walk. The team was very easy to spot with everyone wearing the wonderful T-shirts that our friend Dana Misner created for us. We got lucky with the weather, since the rain did not start until the walk around Lake Phalen was ending. It was also nice to connect with some of the other "Cancer" families that we hadn't seen for a while. Afterwards a few of us went to Davanni's in Woodbury for some Pizza. After placing my order, the register showed a charge of $32. The woman at the register told me to hold on for just a second. She came back a few minutes later with a special card that allowed her to adjust the charges to just $16. She explained that seeing our T-shirt, she realized that we had just walked in the Light The Night fund raiser. She went on to explain that her 2 year old nephew had just been diagnosed with Leukemia himself. Based on her personal experience with recognizing the difficulty in dealing with a seriously ill child, she was inspired to ask her manager to allow her to only charge us 1/2 price. This gesture was completely unexpected, and reminded me of all of the other kind things strangers did for Connor when he was still with us. I have added a couple of pictures from Light The Night, so stop by the pictures!

Zachary Connor continues to grow and bring us joy. He is a great little boy who is very easy to take care of. If he ever gets even a little bit upset, all you have to do is feed him some "big people" food and his great demeanor returns. I have also added a pretty recent picture of Johnny and Zachary, so don't foget to take a look!

Thanks for remembering Connor and for visiting his web site.

Tuesday, August 16, 2005 8:12 PM CDT

Thanks for taking the time to visit Connor's website! Sorry that it has been so long since the last update.

I can't believe how fast time passes. This August 29th will mark the 2nd anniversary of Connor's bone marrow transplant. It was a day of excitement that was full of hope. I still end up on the 4th floor at Fairview University from time to time for work, and it always brings back a flood of memories. The strain, fear, and hope in the parents eyes are all too familiar.
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What follows is a story written by Connor's cousin Patrycia Bonnert. She wrote it for a school project last spring.

Connor
by Patrycia Bonnert

I am going to tell you about a very brave boy named Connor Stokes. This is a sad story, so get ready, you may cry.

The reason he is brave is because he started every day with a smile. When I met him we became best friends. We would go over to his house and he always had a game to play, especially hide and seek. He was very sweet and kind. His brother Johnny took it hard that his brother was dying. So did I.

I spent time with him in the hospital. I felt like my life was going to change forever. My mom was really sad because she loved him very much. He was like a brother to me. When he died, my life did change forever because when I go over to Connor's house, the sweet little boy to play with is no longer there. His voice and laugh were so sweet. When I look at his pictures, I feel like crying, but when I hear his name in a song, I feel like he's an angel watching over his family. It changed all of our lives forever. When my friends showed up, it made me feel better.

In the beginning I said that he was brave and indeed he was. He was the most brave person in our family. I have wonderful memories of him and they won't ever go away because I am going to tell the story of Connor who fought leukemia so hard, to my friends, and my children.

This story of Connor's bravery is magnificent and it is the story you just heard. We will love him forever.
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Mark Saturday September 24th in your calendars. That is the date of this years "Light the Night" walk around Lake Phalen. Let us know if you are interested in joining "Team Connor". Details will follow soon.

Don't forget to help support Lorali Ooten's quest to raise money for the Leukemia and Lymphoma Society by running a marathon in Connor's honor this October in San Francisco. Her website can be accessed at www.active.com/donate/tntmn. This will take you to the home page. Then just click in the upper right corner and select "ooten, lorali".

A co-worker, Jill Roeller, has also begun training for her first marathon this December in Hawaii. She is also kind enough to be running in honor of Connor for the Leukemia and Lymphoma Society. To help support her, please visit her website at http://www.active.com/donate/tntmnJRoelle

It means a lot to us to have these two wonderful women keeping Connor's memory alive. The money they raise will go to a great organization that offers a lot of support and resources for families and patients sufferring from leukemia or lymphomas.

The summer has flown by. Johnny has successfully completed every known camp offerred to kids, including various bible camps, football camp, basketball camp, golf lessons, swimming lessons to name a few. Zachary Connor is already 6 months old and is doing great! He loves to eat and play in his exersaucer and "johnny-jump-up".

Thanks again for remembering Connor by visiting his website!

Sunday, June 26, 2005 9:56 PM CDT

Thank you for taking the time to stop by a visit Connor's web page!

We participated in the Children's Cancer Research "Time to Fly" run this Saturday morning at Harriett Island. It was a great event that included a 10K run, a 5K run/walk, and a 1K or 2K fun run for kids. They even had a $10,000 purse for the winners. (I will try to load some pictures of the event sometime this week).

Saturday night we had a family movie night and watched old home movies. It was fun to see the happiness and overwhelming joy Connor experienced as he rode his Limo home from the hospital after completing his bone marrow transplant. The shrieks of joy as we pulled up to our house, with a large group of friends and family cheering him on was wonderful to relive. Is was great to see Connor playing practical jokes, and clowning around with his brother and friends again. It was also terribly sad to recognize how much this world is missing by losing a boy as charming, funny, and loving as Connor was. It is hard to believe he has already been gone over 1 year and 4 months already. It was very obvious to see how much the dynamics of our family have changed since we lost Connor, and have now been blessed with Zachary Connor.

Zachary Connor continues to bring great joy to our lives.He is now over 4 months old. He is now 14 lbs., and can officially roll over (and sometimes even back!). Johnny is now on summer vacation. He went on a trip to the Badlands, Mount Rushmore, and Wall Drug with his Grandpa and Grandma Hyde during his first week off. Last week he was at a football camp at St John's University. This week he will be at YMCA camp. Some how in-between his camps he fits in baseball where he leads the league in getting hit by a pitch (11 times!). The rest of the summer looks to be as busy.

A very kind request was asked of me a short time ago. Lorali Ooten, a woman I work with often, informed me that she had joined the Leukemia and Lymphoma's Society's Team in Training and that she was going to attempt her first marathon this October in San Francisco. She then asked if it would be alright if she ran this race in honor of Connor! I was deeply touched by this, and immediately gave her my support! Lorali has a goal of raising $3600 for this event. If you would like to see her website and donate to help her on this quest, please visit her website. To get there, go to: www.active.com/donate/tntmn Once you get to the Leukemia and Lymphoma's Society's Team in Training homepage, go the the upper right hand corner and click on the Participant arrow, and then click on "ooten, lorali".

Thanks again for taking the time out of your busy days to remember Connor.

Sunday, April 10, 2005 1:22 PM CDT

Thanks for stopping by Connor's website.

Since not a lot is new these days, I thought I would look back on this entry. I have pasted in my notes from the eulogy that I gave for Connor at his funeral. I will also try to post the other tributes that were spoken that day over the next few weeks.

Connor

Connor Russell Stokes
Con-Man
Con-Air
Little Dude
Little Big-Man
Hulk
Sir Connor
Buddy

Connor was always reaching

From the day he was born, Connor was Reaching to get the most out of life. He was always reaching for FUN, reaching for PERFECTION, and reaching to make people happy. In the end, he was REACHING FOR HEAVEN.

Reaching for FUN:

Connor loved practical jokes. He liked to pretend he was sleeping, or hide when you arrived home. He also liked to put ketchup by his nose to pretend and scare us that he had another bloody nose. He loved swimming and jumping in the lake. He loved playing with his friends, and playing hide and seek.

Reaching for PERFECTION:

When Connor would write out anything, each letter had to be perfect. When he colored, he would always stay in lines from the day he started coloring. When he first started skating and playing hockey, he wanted to practice more to get better. When he would play a new game of Playstation, he would play it until he had conquered it.

Reaching to MAKE PEOPLE HAPPY:

Connor was always joking around. When the Doctors would ask him to take a deep breath, he would hold his breath as long as he could. Connor never wanted anyone crying or feeling sorry for him. He would get mad if we ever asked him if he was in pain or uncomfortable. He would always say the right thing, like "I love you!" everyday. During his full body radiation, it was very sad when they taped him down. Connor helped us a lot by always giving us a reassuring smile as we had to leave the room. When you look at all of our pictures of Connor, he was always smiling (or making a silly face). Connor really wanted to make his Mom happy for his last Christmas, so he made me take him to the store to by her a necklace. He bought her a heart necklace, so she would always know he loved her.

By reaching for fun, perfection, and making people happy, he redefined the meaning of the words Courage, determination, and friendship….

COURAGE:
Facing a serious illness at a young age, he never complained during over three years of very harsh treatment. He was always in a great mood going to the clinic, even though he knew he was about to get shots or have to take yucky medicine, or soon have to deal with the awful side effects of the treatment. He was never afraid. He actually preferred the long days of treatment when he could pack a lunch and spend extra special time with his Mom. For this showing of courage, he was Knighted Sir Connor, Prince of Courage, by the Vulcans.

DETERMINATION:

He showed determination by getting through his transplant. He mentally prepared himself. Even though there was a lot of pain and discomfort (throwing up), he never complained. He just focussed on the calendar, and crossed of days until he should feel better. He went to school right from his spinal tap appointments, because that is what he wanted to do. During transplant, when he was finally able to get outside his room and into the hallways, he would play hide and seek for hours. He would be tired, and breathing hard, but he would say "I must keep playing, I must not give up".
I remember him playing soccer his first year. He would take the ball and just keep kicking the ball through everyone, he would never take the easy route of going around them.

FRIENDSHIP:

Connor developed a very close bond to his friends. This bond was deeper than you would typically see at this age. When Connor began losing his hair again after he relapsed, his brother and 5 of his friends remained united with him by shaving their heads. If he couldn't go to them because of his illness, they would come to him. Also, our friendship with all of you has been strengthened because of the journey we have had with Connor

Because of the way he lived his life, he has become an inspiration to many. He reached for, and achieved so much in life that he will be defined and remembered not as a boy with an illness, but a young man who truly enjoyed life. He will not be forgotten…..He will be remembered every time we…...wash our hands to prevent germs, we fish, eat bacon, bike, swim, laugh, see Hulk action figures, visit the pretty spot at the lake, play Playstation, need inner strength to accomplish a goal, use the Thumbs Up sign, enjoy the simpler things of life, step into our church, eat vegetables, get a haircut, have a picnic, see an RV or a Limo, see the ocean, watch a Disney Movie, jump off the dock, or anytime we eat a pepperoni pizza. His life was so full, his reminders will cross our path every day.

During the last few nights of his life, Connor was reaching for heaven.

Tammy and I had both witnessed him reaching for something on a number of nights during the last few weeks of his life. We believe he was reaching for angels or heaven. On Connor's last night, as I laid with him listening to him breathe, I watched him to see if he would have the same dream of reaching for the angels. He didn’t have to reach. As he took his last breath, the angels came to him, and gently carried his tired body to heaven.

I reach out to all of you now, don’t forget Connor. Don’t forget the impact he has made on all of our lives. He taught us all a lot about life.

Connor –You will always be our Little Hero. We are proud of the way you lived your life. We will miss you Buddy!

THUMBS UP

Thanks again for visiting this site and remembering Connor!

Friday, March 4, 2005 3:25 PM CST

Thanks for visiting Connor's site!

"Coins for Connor" was a big success at Middleton Elementary School. It raised over $3000 for the Leukemia and Lymphoma Society! We brought in Krispy Kremes for the top 3 fund raising classes as of Feb. 25th, in honor of Connor's birthday. The Leukemia and Lymphoma Society will be bringing in a free pizza lunch for the top earning class in the next couple of weeks. If you participated in this event, thank you very much!

This weekend is the KS95 Children's Cancer Research Radiothon. We were able to hear the pre-recorded story on Connor earlier this morning on KS95. Apparently they will play it 4 times a day, so if you dial into KS95 sometime this weekend you may get a chance to hear it. We were also told that if you really want to hear it, and keep missing it, you can call 651-989-KS95 and request that they play Connor Stokes' story. They will try to honor the request within the next hour. Tammy and I were also asked to do a live interview, which we did this afternoon down at Fairview University. We did the interview in the just opened Family Kitchen on the 5th floor. The kitchen was remodeled using funds raised during this event in years past. They did a great job, and we would have really appreciated being able to use a facility like that when we spent so much time there. We have been listening to the radio most of the day, hearing all of the stories about many different kids. The one thing that amazes us is just how many of these kids we know; or worse yet, how many of these kids we knew.

February 25th marked the day that Connor would have turned 7. It completed a pretty difficult week for us, which started with the anniversary of his passing on February 19th. Thanks to many of our friends who remembered his birthday, and decided to come to our house for an impromtu celebration. They came over and had cupcakes, and released balloons with messages to Connor.(I have posted pictures of this event) One of our friends who couldn't make the party released some balloons from their house. She told me the cute story of how after releasing the balloons, one of her younger boys innocently asked her how long it would take until Connor would be able to catch the balloon and read the message they had written to him.

Zachary Connor Stokes is now almost 3 weeks old! He is doing great, and has so far been a very easy baby! I have finally posted some pictures of him, so please stop by the photo album to take a look! Looking at old pictures of Connor as a baby, it is very easy to say that Zachary looks just like his older brother.

Father Tom from St. Ambrose called us last week to congratulate us on the birth of Zachary. He told us the story of another little Connor from our church who was very ill. His parents had called him, asking for special prayers to have his treatments be successful. When the parents called back to tell him that the prayers had worked, he told us he could not help to think that the reason for success was that our Connor was acting as this boys Guardian Angel. This is a great story that we will hold onto as one more wonderful memory of Connor's legacy.

Before signing off, I would like to request some prayers for Don Pribyl, wife Anna and their three kids. They are old friends from college. Don is having a difficult battle with Cancer, and some prayers could really help right now.

Thanks again for visiting the website, and remembering Connor.

Sunday, February 20, 2005 2:06 PM CST

It is hard to believe that a year has passed since Connor lost his brave battle to leukemia. There are too many things that we see on a daily basis that remind us of him, that makes his passing seem more recent. We are reminded of him still everytime we see an RV, Limo,or anytime we order a pepperoni pizza from Domino's. Even all the recent bad press about the Vulcan's reminded us of the coming to our house last year and knighting him "Connor, Prince of Courage!" We still see a lot of his old friends on a regular basis, which also provides us memories of the past, as well as wonder what things would be like today had he survived. The last few weeks have been filled with re-living his last days. The experimental combination of drugs seemed to be keeping his counts in check, but his body finally gave out. I will never forget the last big "squeezee hug" he gave me as I lifted him out of the car after a clinic visit to bring him into the house for the last time. Considering he would live for only another 10 hours, he could still give a good hug!

Thanks to everyone who remebered the year anniversary of his passing. The calls, cards, and flowers meant a lot to us.

The Children's Cancer Research Radiothon is coming up the weekend of March 4-6th. Dial into KS95 to hear an interview about Connor. We are also scheduled to do a live interview on the afternoon of March 4th.

"Pennies for Patients" is a fundraiser organized by the Leukemia and Lymphoma Society. Connor's school, Middleton Elementary of Woodbury, is currently doing a version of it called "Coins for Connor". The classroom who has raised the most money by February 25th (Connor's B-day) will get Krispy Kreme Donuts in honor of one of Connor favorite snacks. The contest runs through March 1st, and the class that collects the most in the end will win a free pizza party! My sister Anne is a teacher in Appleton, WI. Her school just finished their version of "Pennies for Patients", which they renamed "Krispy Kremes for Connor". The school raised over $2500, and Wal*Mart matched the 1st $1000, so they ended up making over $3500 for the Leukemia and Lymphoma Society! We are hopeful that one day this money will help find a cure and also help families going through the battle.

We do have some fantastic news to pass on. On February 13th, at 9:11pm, Zachary Connor Stokes was born! He was 7 lbs 9 oz, and 21 inches long. Zachary is defintely a gift from Connor. We were very content having two boys before, and were not planning on having a third child. After Connor's passing our plans changed, and we now have a new gift. Zachary and Mom are doing great! Johnny is very excited to be a big brother again. I will post pictures soon.

Zachary was born at United Hospital, which is attached to Children's Hospital-St. Paul where Connor was first diagnosed and treated. That alone brought back many memories as we entered the hospital for the delivery of Zachary. As I was leaving the hospital to get the car to take Zachary home on Tuesday, I ran into a man in the elevator. He was carrying a tray of food for lunch back up to the third floor. He explained that they had a long clinic day of IV therapy. His 7 year old son was in his 3rd week of intensive chemo therapy after being diagnosed with ALL leukemia. We spoke for a few minutes, and exchanged numbers. The pain and fear in his eyes and voice reminded me of what we went through when Connor was first diagnosed. We were, however, able to laugh at how much the kids eat while on steroids!

Other great news to report! My sister Nancy just recieved a clean bill of health after her CAT scan. She is still awaiting the results of her MRI, but her physicians were comfortable with the data they had already that she was allowed to have her Port-a-cath removed! She will remain on preventive medications for the next 5 years, but it looks like all the chemo and radiation has won the battle against breast cancer!

Thanks for visiting the site and keeping Connor's memory alive!

Tuesday, December 28, 2004 7:53 PM CST

Merry Christmas, Happy Holidays, Happy New Year to everyone!

December 19th marked the 10 month anniversary of the loss of Connor. It is unbelievable how fast the time has passed. All of the memories from last Holiday Season seem too fresh to have occurred so long ago. Last year at this time we were experimenting with Combotox to try to extend Connor's life as long as we could. While we have been enjoying this Christmas as best we can, there still remains a lot of emptiness. We are lucky to have such a great son like Johnny, and the anticipation of Zachary, to make sure we focus on how good we have it now and in the future.

Children's Cancer Research Fund had a formal evening fund raising event in October that featured Alanis Morrisette. They had on send in some pictures of Connor for a brief video they were going to show during the event. We received a copy of it just arrived in the mail the other day. They did a great job showing various kids in the beginning (including Connor) who unfortunately had lost their life to childhood cancer. They then discussed the progress that has been made, and then finished showing many survivors. Sandwiched in the middle was a very pleasant surprise. They showed some video of this summers race at Harriett Island, and Johnny and his cousin Sandra were shown running as they began their one mile race! The video also clearly showed a sign on one of our friends boys that said "In memory of Connor Stokes". We are very happy to have received another great memory and tribute to Connor!

A few weeks ago Greg Thunder and Cheryl Kaye of KS95 interviewed us to create a story they will play during the Children's Cancer Research Fund and Gillette Children's Specialty Healthcare Radiothon that will occur March 4th-6th, 2005. The Radiothon is going to be held at Ridgedale this year. Tune in to KS95 during the radiothon to hear the story!

Thanks for visiting the site and remembering Connor! I hope you all have a great New Year's, and a healthy 2005!

Sunday, November 21, 2004 9:24 PM CST

It has now been 9 long months since we lost Connor. We have now also reached another one of those "first" anniversaries of the year. It was a very difficult day, last November 20th, when Connor's Doctor gave us the terrible news that Connor had officially relapsed again. His options now were very limited. From here on out, treatment would be focussing on comfort care. He did not know how much time we had left, but we should have the opportunity to get into some trials of experimental drugs that would hopefully be able to provide us with some additional, precious time.

Our lives forever changed that day. We went from having optimistic hope that the worst was behind Connor, to providing him the best possible life in the little time he had left. While we held out some hope for a miracle from the experimental drugs, we began to let Connor (as Tim McGraws new song states) "Live Like You Were Dying". We took a wonderful trip to Florida to see the Ocean and Disney World again. We rented him a camper, let him attend school when he felt up to it, and let him spend as much time with his close friends as we could. He was even Knighted by the St. Paul Vulcans as "Connor, prince of Courage. Thanks to all of the help from our friends and family...anything that Connor wanted to do, he was able to.

We also started to face some difficult situations that at times did not feel like reality. We began to do some research on cemetaries and funeral homes. We started to wonder how and when we would tell Johnny and Connor. We began to worry about how his friends would handle it. How would we handle it? We began to stress over how it would happen....would it be painful or peaceful? We began to worry about the kind of difficult decisions we might have to make. We also worried about how we would be able to stay strong for Johnny and Connor now, and Johnny afterwards. Would all of this affect our relationships with the families of Connor's friends? The Holidays were also coming up. Thanksgiving and Christmas were both wonderful, and difficult, because we knew they were going to be the last ones we would spend together as a complete family. This experience has without question made us stronger people. It also reminds us, every minute of every day, what is really important in life.

Tammy and her friends have done a great job of decorating Connor's grave for the holidays. He has a couple of wreaths on stands, as well as two little Christmas trees on the sides of his headstone. They are complete with little ornaments! It is also decorated with a string of decorated garland. There is also a wooden Santa to ring in the spirit of Christmas.

Johnny continues to be an amazing young man. His football team ended the season with a city championship! He has now started hockey and basketball, which will keep him very busy this winter.

Tammy's pregnancy is still going well. Zachary will be a gift that we would never had experienced had we not lost Connor. She is busy re-doing Johnny's room now, and will soon start on getting Zachary's room ready.

My sister Nancy has now completed both her chemo and radiation therapies as she continues to battle her breast cancer. She will now take Arimidex for the next five years in hopes of keeping the cancer away for good!

Thanks for visiting Connor's site. It means a lot to us, to have all of you continue to remember Connor.

Tuesday, October 19, 2004 9:16 PM CDT

It has now been 8 long months since Connor left us. It is difficult to explain how the pain continues to manifest itself, but I did come across an interesting paragraph from an article in the newspaper about a month ago. It stated: "It has been said that a child who loses his parent is an orphan, a man who loses his wife a widower, a woman who loses her husband is a widow. There are no names for a parent who loses a child, for there are no words to describe this pain".

We do have some great news to share with everyone. We are expecting a new addition to the family. Tammy is pregnant, and we are expecting another son, Zachary Connor Stokes, on February 21. Johnny is thrilled to have another opportunity to be a big brother!

Light the Night was a huge success. On September 25th, "Team Connor" raised over $3,000 as over 60 of us made our way around Lake Phalen to raise money for the Leukemia and Lymphoma Society. It was a fun night that included food, entertainment (dancers,singers,Vikings Cheerleaders, etc), and then moved into a walk around Lake Phalen with everyone carrying an illuminated balloon. It was wonderful to see all of our friends and family that attended this event. Thank you very much for taking part in this event to remember Connor, and to raise money for a good cause! (Take a look at a couple pictures from the night that I have added to the photo album.)

Connor's Aunt Eileen ran the Twin Cities Marathon for Team Leukemia in honor of Connor. She ran the race with a picture of Connor pinned to her back. She also wore a necklace that he had made for her for good luck when she ran it the year before. The Star Tribune did an article on her running the race for Connor. Eileen finished in 3 hours and 26 minutes, placing her 107th out of over 2800 women!

Some more good news to report. Connor's Radiation Buddy (Brad Pint) had a great one year post transplant check up! He and his wife also joined Team Connor for Light the Night. They won "Best Dressed" because they walked with us in between a wedding and a reception. Also, my sister Nancy only has a couple of weeks left of her daily radiation therapies! She continues the fight of her breast cancer very bravely.

Thanks for visiting the site. Thanks for continuing to remember Connor. Thanks for all of the support you have given, and continue to give our family.

John, Tammy, Johnny, Angel Connor, and now Zachary Connor

Monday, September 13, 2004 10:53 AM CDT

REMEMBRANCE

YOU CAN SHED TEARS THAT HE IS GONE,
OR YOU CAN SMILE BECAUSE HE HAS LIVED.
YOU CAN CLOSE YOUR EYES
AND PRAY THAT HE'LL COME BACK,
OR YOU CAN OPEN YOUR EYES
AND SEE ALL THAT HE HAS LEFT.
YOUR HEART CAN BE EMPTY
BECAUSE YOU CAN'T SEE HIM,
OR YOU CAN BE FULL OF
THE LOVE THAT YOU SHARED.

YOU CAN TURN YOUR BACK ON TOMORROW
AND LIVE YESTERDAY, OR YOU CAN BE HAPPY,
FOR TOMORRAW BECAUSE OF YESTERDAY.
YOU CAN REMEMBER HIM AND ONLY THAT HE IS GONE,
OR YOU CAN CHERISH HIS MEMORY AND LET IT LIVE ON.

YOU CAN CRY AND CLOSE YOUR MIND,
BE EMPTY AND TURN YOUR BACK,
OR YOU CAN DO WHAT HE'D WANT:
SMILE OPEN YOUR EYES, LOVE AND GO ON.

This was given to me by my mother after Connor's death. It really seems to hit home. We Miss Connor deeply but we are thankful that we were honored with him for almost six years.

Mark Your Calenders for the Light Your Night Walk on September 25th. We have created a Team Connor for this event. This is a great way to honor our amazing son and the impact he has made on our lives. This event is an annual event for The Luekemia Society. It not to late to join Team Connor or make a donation. If interested please drop me an e-mail and I will get you the needed information. The walk is at Lake Phalen in St.Paul on September 25th. Team Connor will be meeting at 5:30 and the walk begin at 7:00 pm. Thanks you for your continued support and we hope to see you on the 25th.

With all our love,

The Stokes Family

Sunday, August 29, 2004 9:50 PM CDT

What a difference a year makes!

A year ago today, Connor had his bone marrow transplant. It followed three 35 day rounds of heavy chemo, followed by entering the hospital for more intense chemo and full body radiation. He received his transplant at 2:45pm, and by 3:10 it was all over. We felt that Connor had earned a second birthday after enduring all he had, and we now hoped he had a new lease on life with his transplant. A year later, we are faced with the reality that the 29th of August will forever be another one of those difficult days for us to get through.

Just over a year ago today, Joe Rossini came to visit Connor in the hospital. He wanted to give Connor support as he was preparing for his transplant. Joe, had gone through a bone-marrow transplant a year earlier. It was a beautiful sight to see both of these brave boys laughing as they chased bubbles around the room. Last night, Johnny and I played in a memorial golf tournament for Joe. It was organized by his parents to honor him, and to raise money for the Leukemia and Lynphoma Society.

This Wednesday starts a new school year in Woodbury. We anticipate this to be another one of those tough days.We will see Johnny head off to 3rd grade without Connor having the opportunity to start 1st grade with his friends. Connor will be there in spirit, however, with his memorial tree growing strong near the front entrance of Middleton Elementary Tree.

The good news is that Connor's "Radiation Buddy" Brad Pint continues to do well one year post-transplant! Also, my sister Nancy has now completed all of her chemotherapy! She will start her 33 days of radiation therapy in a couple weeks.

Also, the Leukemia and Lymphoma Society's "Light the Night" event is coming up September 25th at Lake Phalen. Give us a call if you are interested in joining "Team Connor".

Thanks for all of your continued support. I hope everyone has had a great summer (based on the calendar, not the weather)!

John, Tammy, Johnny, and Angel Connor

Thursday, August 19, 2004 3:57 PM CDT

It has now been 6 months since Connor has left us. The saying of "time heals the pain" obviously meant longer than 6 months. Tomorrow (Aug 20th), is also the one year anniversary of Connor entering the hospital at the University of Minnesota to begin the process of a bone narrow transplant. He endured heavy chemo and radiation until the actual transplant day of August 29th. We were hoping to celebrate that date every year as the second birthday that Connor had earned.

Some exciting news on our front is the news that Johnny will be getting a new brother or sister next February. Tammy is approximately 13 weeks pregnant, and we are very excited that Johnny will not have to grow up the rest of his life as an only child. The due date right now is February 21st.

Through the messages left on the website, and the letters and calls we continue to receive, it is comforting to know that all of you have not forgotten Connor. It is also comforting to know that the memorial donations that many of you provided are helping others that are going through we we went through. The three charities we selected were the Leukemia and Lymphoma Society, Caring Bridge, and Make*A*Wish. Here is a little background on how we had selected these organizations.

LEUKEMIA AND LYMPHOMA SOCIETY: Connor was first diagnosed with ALL Leukemia on December 6th, 2000. Just a decade earlier, this diagnosis was met with an unfortunate cure rate of approximately 40%. We were thrilled to hear that with newer advances and therapies, the cure rate for Connor would be 70-80%. The Leukemia and Lymphoma Society is a charity that has helped fund some of this research. They also help families who need help paying the parking and the copays for the many office visits and medicines these kids must take. They are also an excellent resource for families to turn to for information.
THE CARING BRIDGE: www.caringbridge.org/mn/connorstokes (Connor's Website). This website has been a huge help to us. It is a tremendous organization developed to help people communicate efficiently during times of health issues. It allows users to easily develop a web page for others to view the latest progress, pictures, as well as a vehicle for friends and families to leave words of encouragement. Connor used to love getting on his web site to see who had left him a message! If you know anyone going through a health crisis, let them know about Caring Bridge!.
MAKE*A*WISH: Many of you have already heard about Make*A*Wish. It is an organization set up to grant a "wish" to any child diagnosed with a terminal illness. Some kids choose trips, others choose shopping sprees or a special toy. One recent child actually had a video game created where he is the hero fighting off cancer cells and the evil hair loss monsters. This is a free game that can be downloaded from the Make*A*Wish website. We were fortunate enough to have a "wish-trip" to Disney World granted to us. We aere able to spend a wonderful week at Give Kids the World Resort (another outstanding organization/resort specifically for terminal children!). We spent the week visiting the Disney and Universal theme parks. This gave our family some very joyful memories that we will never forget.

One other fund raiser that we are participating in is the Light the Night Walk for the Leukemia and Lymphoma Society. It will be held on Saturday, September 25th at Lake Phalen. There is food and entertainment starting at 5:30pm, followed by a walk around the lake with everyone carrying an illuminated balloon. We have formed a "Team Connor" and would love anyone that is interested to join us. If interested in joining us, Please e-mail Tammy with your name , address, and phone number at JCMommy2@aol.com. She will then send you a fund raising envelope. Everyone who raises $25, will get an illuminated balloon. If you raise $100 you get a T-shirt, $200 gets you a T-shirt, sweatshirt and ballon. $300 will also get you a denim shirt or a backback. Prizes keep going up for each financial milestone gained, and all of the money goes to a very good cause. Call us if you have any questions about it.

Thanks for everyone's continued support and prayers. Please remember my sister Nancy in your prayers. She is about to take her final round of chemo prior to starting her radiation therapy. Her website is listed below. Also, we are thrilled with the continued progress Connor's "Radiation Buddy", Brad Pint is making towards his recovery from his bone marrow transplant that he had last August 28th!

Tuesday, July 27, 2004 9:27 AM CDT

Check out the new pictures!!!!

Sorry that it has been so long since we up-dated Connor's page. The five month anniversary of Connor's death has past but the feelings of this loss continue to be a struggle in our daily lives. This week Johnny and I are up at the lake. John drove us up on Saturday but had to head back for work. My sister and her son Jack from California are here also. The lake is a place our family has struggled coming to because of all the memories that surface. Connor had a deep love for the lake. He loved swimming, fishing, going to the Hayward candy store, and campfires. It has been difficult being up here without him. The memories that we have made while vistiting the lake will someday warm our hearts, but right now they make us long for him. Johnny has been a trooper as always. When we first got here we headed towards the dock. Emotions took over me and I sat there and cried. Johnny sat with me and waited until I was ready to head back up to the house. We are enjoying our visit and Jack ( my 4 year old nephew) is enjoying Johnny. He wants to do whatever Johnny is doing. It is fun to watch them interact. It also breaks my heart that Johnny lost the relationship with a brother. Connor and Johnny were very close and would have been able to make thousands of additional memories together. We continue to miss Connor and cherish the boy that he was and the way he lived his life.

Please keep John's sister Nancy in your prayer as she fights her battle with cancer. Her positive attitude and strength is amazing. Connor would be so proud of her and her ability to overcome challenges and her determination to keep a positive attitude. Her website is listed below.

Thank you for your continued support. I wish I could say that we did not need it but we do. We miss Connor deeply and our lives will never be the same.

Tommarrow is Johnny's 9th Birthday. Sometimes I forget that he is still a young boy. He has handled all the situations that have been thrown our way with such grace and maturity. We are so proud of him!!!

Happy Birthday Johnny- We love you.

Mark your calender for the "Light The Night walk" on September 25th. We are creating a team Connor for this event. More details are to follow. We would love for all of you to join us for this event and to remember Connor and provide other families with support that are currently fighting Luekemia.

Love,

Tammy & John

Saturday, June 12, 2004 8:20 AM CDT

We hope everyone is enjoying the beginning of summer break. Johnny has been out of school for over a week. It is nice having him home during the day with me. Last year Connor spent alot of time in the hospital in treatment. Grandpa and Grandma Hyde were staying at our house with Johnny. Johnny really enjoyed his time with them and the time with Connor when he was home. I really want this summer to be spent doing things that Johnny wants to do and enjoys. He has given up alot over the years as activities were based on what Connor wanted to do. Johnny never complained he just wanted his brother to have fun and be happy. Johnny amazes me everyday. He is he most caring child I have ever met. He talks about Connor all the time. He remember the good times, funny stories, and the joy he brought to our family.

As the four month mark since Connor left us nears, the feelings of loss and sadiness are still as much a part of our everyday lives today as they were on Febuary 19th. Some say time eases the pain, I think time make the pain more managable because you learn to live with it. It is amazing the small things that trigger so much emotion. We know summertime will be filled with so many reminders of the things Connor loved and will miss. I think the most difficult place to go this summer will be the lake. Connor loved everything about the lake. Fishing, boat rides, swimming and campfires. We need to go their and face this saddness because it was a place dear to Connor.

UDATED PICTURES UNDER PHOTOS
John updated with pictures of the tree dedication at Connor and Johnny's school and the yearbook page that was dedicated to Connor.

Please keep Nancy in your thoughts and prayers. She is not feeling well from all the treatments she is getting to fight her cancer. She has amazed us with her positive attitude and sense of humor. We know this fight is difficult and words of encouragement go a long way. Her website is listed below under links. Drop her a note and let her know that you are pulling for her.

Thank you for all your continued support as we travel a different journey. We love you all.

Johhny has a few things to add:
(ILOVE YOU CONNOR VERY MUCH ILOVE BUDDY.WE PLANTED A TREE AT SCHOOL. I MMIISSSS YOU BOY)
LOVE
JOHNNY

Saturday, June 12, 2004 8:20 AM CDT

Wednesday, June 2, 2004 9:11 AM CDT

We hope everyone had a great long holiday weekend. The last several weeks have been full of mixed emotions. Last summer was busy with treatments and appointments. Along with the busy treatment schedule he found time to have fun playing with friends, going to the lake, sleeping in friends campers, and playing baseball. Now that the weather is nicer (when it is not raining) all I see is children enjoying all these activities that Connor loved. Two of Connor's close friends got pools last fall. I know that he would have enjoyed swimming at their houses all of the time ( he would have wanted to live at their houses because as he would say they are funner).

Several special events and memorials haven taken place over the last week. First, a tree was planted at Connor and Johnny's school in memory of Connor. The prinipal said several words about Connor. Johnny's second grade class and Connor's kindergarden class formed a circle around the tree. Then placed the tree in the ground and let the kids push the dirt around. The tree was donated by friends and the school recieved donations for a plaque that will be placed by the tree. We will put pictures of this on the site soon. Everytime I go to the school I will see this tree and watch it grow. We will watch it grow tall, bloom, and mature. Much like Connor would have grown and matured over the years.

The school also dedicated a page in the yearbook for Connor. We will try to load this so everyone can see the great tribute to him. These dedications mean so much to our family. We are proud that Connor was so special to so many people. He still inspires us daily as we live our lives to remember the good times, cherish the memories, and never forget the impact he made on our lives.

Connor's final resting place (known as his new pretty spot) at Resurrection Cemetery is finally complete. The family monument, foot stone, and benches were installed last Thursday. It is wonderful to finally have it complete.

Thanks for all your love and support.

Thursday, May 6, 2004 1:43 PM CDT

This background reminds me of Connor. He always look on the bright side of situations. He never let the challenges of life get him down. He brought so much sunshine to our lives. I was looking through some cards this week and I found a letter that was sent to us shortly after Connor's death. It was written by one of his aunts. It went as followed:

It is often said that "Everything You Need to Know in Life, You Learn in Kindergarten." I now believe that everything I need to know in life, I have learned from a Kindergartner named Connor. Connor taught us all to live life to the fullest, love with all your heart, and persevere through the challenges life can throw your way.

What a tribute to his life!!!!

As Mother's Day approaches so do so many emotions. Emotions of pride, saddness, hope and happiness. We are proud to have Connor as a son. He was and will continue to be our inspiration. We have feelings of deep saddness that he is not here on earth with us. We miss his touch, his voice ,his smile ,and his sense of humor. We have feelings of hope that all the people who's lives he touched will never forget him and the lessions he taught us. We are happy for all the memories that we have. We will miss him deeply as we celebrate the day.

We will be walking in the Race for the Cure on Mother's Day. This is an event that we have done for years to honor my mom's successful fight against breast cancer. This year the event will be bitter sweet. We celebrate a success story and mourn for a love one that will begin the fight. John's youngest sister was told this week that she has breast cancer. She will be having surgery on Friday to determine the best course of action. Please keep her and our entire family in your prayers. Nancy is a wonderful person, mom, and friend to many. We will keep you updated as we recieve news until then thank you for your prayers.

Thank you for your support. You help us meet the challenges of the days that we endure without Connor. Thank you for all the cards, messages and prayers. We love you all!!!!

Happy Mother's Day

Tammy, John, Johnny, & our angel Connor

Thursday, May 6, 2004 1:43 PM CDT

May 5th, 2004

I found the new background so fitting for Connor. One of Connor's favorite summer activity was catching frog in the backyard and at the lake. It's hard to believe that it has been over two months since Connor left us. Some days it feels like just yesterday that we were going to the park. Other days it feels like an eternity since he gave me his wonderful smile. Now that spring is here all the kids are out riding bikes and playing. Tessa ( Connor's future girlfriend!! He would never admit it!!!!) and some others have been coming around and playing. Connor would have loved it. The other day some of the children were talking about Connor. One of the children had a cousin over that had never met Connor. During the conversation the cousin asked " were is Connor?" The other explained that he was in heaven." Tessa then continued on and said " He was my best friend." This conversation brought tears to my eyes. What a wonderful conversation to witness. Sometimes I fear that people will forget about him and his inspiring personality. But then I witness conversations like this one and it makes me proud.

Johnny is doing well and celebrated his First Communion last Sunday. He did a wonderful job and so many were their to ensure that his day was special. He continues to amaze us with his positive attitude and kind spirt. Not a day goes by that he doesn't talk about his brother. The conversations are not sad ones but are told with a smile on his face.

Thank you for your continued support during these difficult days. Your phone calls, cards and guestbook messages brighten our days. Thank you for talking about Connor. It may make a sad sometimes but we love to hear memories about him. After all that is all we have left.

We love you all

Tammy, John & Johnny

May 5th, 2004

Monday, April 12, 2004 12:55 AM CDT

The last weeks have been very difficult. Now that spring is here so many things remind us of Connor. Easter was the first holiday without him here. This weekend was the first time we have headed to the lake . We have not been there since last August. The lake was one of Connor's favorite places. He loved to swim and fish. Our attitude back then was one of hope.

April 14th will be another difficult day for us. That was the day last year that we learned of Connor's relapse. The cancer that stayed away, return and we were told that a transplant was needed. At that time, we never dreamed that it would be our last Easter or our last summer with Connor.

We miss him deeply everyday. I came across and entry on a different site that expresses these feeling.

The loss of a child is like having a piece of a puzzle missing.
Everytime you look at the puzzle, all you notice is the missing piece.
You get mad that the piece is missing. You frantically try to find it.
You just know that if you could get that piece fitted into the puzzle, everything would be perfect.
As you all know, that particular piece will never be there.
So, we must look at the puzzle differently.
Try to appreciate the pieces that are there and let those pieces-- your family, friends, and children, help ease the pain of that missing piece. We will never not miss that piece, but you will learn to see and appreciate the supporting pieces even more.

Connor Memory of the week.

Last fall Connor was trying so hard to learn to ride his bike without training wheels. When he would fall. He would always look at me and say " If at first I don't successed - Try Try again. Right Mom"
This example should his determination. A characteristic that we will always remember.

Thank you for all your love and support during his difficult time.

Tammy & John

Monday, April 12, 2004 12:55 AM CDT

Sunday, March 28, 2004 9:54 AM CST

It is hard to believe that it has been six weeks since Connor's death. Sorry for the delay in updating. The updates in the past focused on Connor's counts and discribed all the fun things that he was doing with family and friends. Connor brought so much joy to our family that it is hard to live life without him. We now live a different life. A life that does not focus on appointments, hospital visits, and meds. A life that our number one goal was a cure. We would take this life back in a heartbeat if we could. Our life now is dedicated to love Connor, cherish the times we had with him, and to live our lifes with the courage and strength he taught us.

The generosity of our family and friends during Connor journey was amazing. All of you truely helped us get through the difficult times. Everyone showed Connor and our family so much love and support. The number and amount of memorial funds were amazing. Thank you to everyone that donated to these oraginations that are striving to help families dealing with cancer.

As a family, we are trying to start a new phase in our life. John is back to work. Johnny is done with hockey and waiting for the baseball season to begin. Johnny has shown so much maturity and courage during this difficult time. We are so proud of him and the way he displays his love for his brother.Johnny and I went to Florida over springbreak. Some friends were generious enough to share their vacation plans with us. We spent the days swimming and visiting several of the disney parks. As for me, I have been trying to keep busy and get organized. We all miss Connor so much and we cherish everyday that we had him with us.

I am currently working on a scrapbook of Connor's life. I am having a section that includes things or events that people most remember about Connor. If you have a memory that you would like include please mail it to our home or enter it on the guestbook.

Again, thank you for being the best family and friend in the world. We love you all.

Tammy, John & Johnny

Sunday, March 7, 2004 8:19 PM CST

Thank you all for continuing to view Connor's page and offering words of support. Everyone's support has helped us get through the last couple of very difficult weeks for our family.

In order to keep Connor's spirit alive, I plan on updating the site on a regular basis to pass on stories of how Connor has affected various people. He was such a vibrant child, full of life, who has been able to touch so many people by the way he lived his life. Today I would like to pass on the letter that Father Tom Walker wrote for the St. Ambrose Church Bulletin last Sunday.
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FROM OUR PASTOR

The hand of God will hold you. Last Monday we gathered to commend one of our little ones into the hands of God. For many months we have prayed for Connor Stokes, and Monday our prayers supported him on his way to eternal life. There were many stories from Connor's life that inspired his family, friends, and all who met him. One story in particular teaches us all a lesson for this season of Lent and for all our lives.

Connor's family had taken a special trip to Florida and celebrated his 6th birthday a little early. (Connor would have turned 6 last week). They asked Connor if there was anything else he wanted to do. Connor was fascinated by RV's after a recent exposure to them at a boat and camper ahow. He wanted to spend one night in an RV. His family ran around town in January looking for someone who would rent an RV in the middle of winter. Imagine the look of the salesman's face when they explained they wouldn't be driving the RV hundreds of miles. They just wanted to take it and park it in their driveway in Woodbury. When Connor and several friends came to inspect the RV, his family wondered if it would meet with his approval. Connor said: This RV is my destiny!

How far have we come from the days when nothing would please us more than spending the night in an RV or camping out with a few good friends? How many of us dream dreams about a destiny we will never attain? Often upon reaching one goal in life, we already have our sights set beyond to the next goal. Do we even stop long enough to see where we are? Have we learned to live like Connor did for today - for this moment? Do we pause long enough to see what we already have and how we are blessed with family and friends, or are we too busy wanting and hoping for more? Has God already surrounded us with riches, yet we haven't slowed down long enough to take notice? Sin comes through giving in to the pull of every desire. Joy comes from realizing God has already provided more than we need. I think I learned that in a whole new way through Connor, who lived a lifetime of joy in six years.

Father Tom Walker

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Many of you who have followed Connor's story have most likely also heard of Brad Pint. He was coined Connor's "Radiation Buddy" after he befriended Connor while the two of them were going through full-body radiation therapy together. Brad's most recent tests have come back showing that he still has some cancer cells left in his bone marrow. They have now changed his therapy plan to try to clear him of his cancer. He will have follow-up tests in 3 months. Please pray for, and support Brad and his family in any way you can. He unselfishly kept tabs on Connor's progress and supported him all along, even though he was battling cancer himself. His progress can be followed at www.caringbridge.org/mn/bradpint.

Thanks again for everyones support and prayers! We have been overwhelmed by all of your kindness!

Wednesday, February 25, 2004 5:39 PM CST

Tonight at 1:44 am will mark one week since Connor has left this world for heaven. What a week it has been! No matter how much you prepare for it to happen, you are never ready. Connor's life was a very full one, leaving us with many things that trigger a memory of him. Simple things we come across, such as bacon in the refridgerator, kids laughing, movie previews, or coming across one of his toys, brings up a wave of emotion. Time will hopefully turn all of these waves of emotion into joyful ones, as we reflect on the positive way he lived his life.

Today was Connor's 6th birthday! Connor had wanted to bring a few friends to the Science Museum to celebrate. We are glad that we had his surprise birthday party a few weeks ago! We honored Connor today by having our extended family, and many of his best friends, gather at his grave. We shared cupcakes and released balloons with messages, in hopes that they reach him in heaven. We also carefully placed flowers, a hulk figure, and six candles. We look forward to the family headstone and Connor's footstone to arrive in a few weeks. His grave, in the center of our family plot, will also be surrounded by a couple of marble benches. It is located next to a beautiful group of mature trees, overlooking a lake. This will become Connor's new "pretty spot".

Thank you to everyone who attended Connor's visitation and funeral. Your support helped us make it through some very difficult days. It also brought us a lot of pride, knowing that the way Connor lived his life has touched so many people. I hope you had the opportunity to look around at the hundreds of people who attended the services. Each and everyone of them that you saw, has somehow helped us out along our journey. It was a gathering of very kind, and giving people, who gave of themselves to make Connor's life a better one. Thank you all very much. We are very lucky to have all of you in our lives.

Since most of the comments on the web page always come from me, I think that it is important to hear from Tammy. What follows is the letter to Connor that she wrote, and had Father Tom Walker read the night of the visitation.

Dearest Connor,

As my heart is breaking today,there is so much I want to say to you.
I will never forget the December day that we were told of your illness. At that time we never imagined how difficult the journey ahead was going to be. The last three years has brought so many challenges and emotions. The one thing that always stayed the same was your courage, determination, positive spirit, and sense of humor. You were, and will continue to be my inspiration.

Some may say we lost the fight, but I know we won. I know you are in a better place. A place where there is no pain, no medicine, no central lines, and no cancer. I know your mission in heaven will be to bring others joy with your kindness and sense of humor, just like down on earth. You will continue to inspire the good things in others, and you will be free from all of the struggles that occurred here on earth.

I am sad for all the things in life that you never got a chance to experience. The first day of first grade, hockey games, baseball games, graduation and adulthood. You experienced so much more than others your age, and you showed maturity well beyond your years.

I do find comfort looking back at all the things you did experience in your almost six years of life.
The experience of family. A family that consisted of grandparents, aunts, uncles, and cousins that were always there for you to help you meet each obstacle. They changed schedules, plans, and ways of life to ensure that your life would be fulfilled. You brought so much happiness to all of them, and they will never forget you.
The experience of having a brother that loved you with all his heart. If there was ever anything you ever wanted, he was there to help you get it. He never complained when Mom had to be with you day and night. His only wish for you was for you to get better. If you ever asked Johnny who is hero was, he would always say Connor. He was your brother and friend.

Johnny, you were the most kind and amazing brother. Connor was lucky to have you in his life.

The experience of true friendship. The kind of friendship that some search for their entire life. Alec, Ben, Matt, JT, Courtney and Josh brought so much happiness to your life. They were always able to cheer you up, and brought a smile to your face. To them, you were their best friend. It didn't matter if you were too tired to play, or you had to stay out of public places. If you couldn't go to them, they came to you.
The experience of love from thousands of friends, family, and even strangers from so many phases of life. You indeed inspired them all, and they flooded you with kindness and love.
I will miss the special things we did. The motorized car rides to the park, the picnics, the movies, having your friends over to play, swimming, fishing at the lake, playing hide & seek, playing board games, and catching frogs. I will miss your touch, your hugs, your ability to make me smile, your courage, and your zest for life.
There is nothing that made me happier than taking care of you and Johnny.

Having you as my son has been a privilege that i will treasure for the remainder of my life. I am a stronger person today than I was three years ago. I no longer take time for granted and I appreciate the little things in life. You taught me what true courage and determination are. Most of all, you taught me what was, and what is important in life.
You have made me into the mother I am today. I hope you look down from heaven and watch me, that I can make you as proud of me as I am of you.

I will think of you every second of every day until we meet again. I love you and will miss you. I will continue on without you, because I know you would have it no other way.

Love forever,
Mom

Thursday, February 19, 2004 8:11 PM CST

Connor passed away at 1:44am this morning. While we we surprised at how quickly he passed away, we are comforted by the fact that he died peacefully. While we knew in our hearts that this day would come, nothing could prepare us for the pain of the moment. We were very lucky to have a son like Connor for almost 6 years. He showed us what courage really means. He had a passion for life that only allowed him to see the bright side of any situation. He developed a bond with his close friends that was stronger than you would typically see in kids his age. Connor had an innate ability to bond with everyone he met. He enjoyed life to the fullest of his capabilities, never taking a day of feeling well for granted. Through his illness, he was able to show us how good and kind all of you are. This journey has allowed us to cross paths with many incredible people that we will never forget. Connor taught us about life. How fragile it can be, how joyful it can be, and how painful it can be. We are extremely proud of all that he accomplished in his short life. He will be terribly missed.

Thank you to everyone for all of your prayers and support. We could not have made it through these last 3+ years without you.

Stokes, Connor Russell
Age 5, of Woodbury

Passed away peacefully at home of leukemia, on February 19, 2004. Born February 25, 1998. Preceded in death by his grandfather, Dr. John Stokes. Survived by, and deeply missed by his parents, John and Tamara Stokes; his brother and best friend Johnny; Grandparents Ralph and Kathy Hyde, and Dianne Stokes; Aunts Tracy Shields, Eileen (Bill) Bonnert, Kathy (Steve) Warmack, Anne (Chris) Sharelis, Nancy (Ted) Scislowski; cousins Jack Shields, Patrycja and Sandra Bonnert, Tyler Warmack, Michael and Ashley Sharelis, Ryan, Jack, and Alec Scislowski; and many very close friends. Connor is our little courageous hero who inspired many by the way he lived his short but amazing life. He bravely fought his illness for over 3 years, never complaining or feeling sorry for himself. He attended preschool at Guardian Angels in Oakdale, and was a Kindergartner at Middleton Elementary School in Woodbury. He loved practical jokes, swimming, fishing, hide & seek, RV’s, picnics, taking pictures, Playstation, music, baseball, hockey, soccer, and playing with his brother and friends. To learn more about Connor, please visit his web site at www.caringbridge.org/mn/connorstokes. Special thanks to Minneapolis/ St. Paul Children’s Hospitals, and Fairview University Bone Marrow Transplant Unit. Visitation will be on Sunday Feb 22nd from 7-9 pm, with a prayer service at 8:30pm. at St. Ambrose of Woodbury Catholic Church, 4125 Woodbury Drive, Woodbury 651-714-1058. Funeral service will also be at St. Ambrose on Monday, Feb. 23rd at 11:00am, with visitation 1 hour prior to the service. Memorials preferred to Make-A-Wish of Minnesota, Leukemia and Lymphoma Society, and Caring Bridge.

Johnny would like to add a few words:

Connor was the best brother I could ever have. I will miss him everyday and my life will be alot different without him.

Wednesday, February 18, 2004 8:15 PM CST

December 6, 2000, is a day we will never forget. It is the day that Connor was diagnosed with leukemia. Since that day, Connor has inspired many people as he has courageously fought to beat his leukemia. April 14th, 2003 is the day we found out that he had relapsed. August 29th 2003 is the day that Connor had his bone marrow transplant, earning himself a second birthday. Today is the day that Connor will finally be able to stop fighting, and just rest. Today we were informed that his liver is failing, and his lungs are beginning to fill with fluid. Connor only has a few more days with us. He will spend the rest of his time at home, with his family. The only medicines he will be on now are morphine for pain, and Amicar to help prevent bleeding. Our hearts are breaking, but we are comforted in knowing that the end should be peaceful for Connor. Tonight, we had Father Tom from St. Ambrose came to our house to perform that Annointing of the Sick ceremony. The next few days will be very difficult ones for us. We truly appreciate all of the support and prayers from all of you. (I have also added a few new pictures)

Johnny would like to add a few words:

I am very sad that my brother is going to die. I wish he could live longer because he is my brother and he has told me that I am the best brother. I also think that Connor is the best brother.
love johnny

Tuesday, February 17, 2004 9:14 PM CST

Connor continues to bravely fight his battle without any complaints. He received some more platelets and Velcade on Monday. His labs showed that he has a low amount of albumin, probably due to lack of nourishment while he was not eating because of his clostridium difficile diarrhea. The low amount of albumin is what has been causing his fluid retention. He felt much better on Monday after skipping the TPN (IV Food) Sunday night. Monday night we brought Connor to short stay at Children's Hospital of St. Paul for an albumin transfusion to try to stop the retention of water. He received another transfusion today, and will receive the third, and hopefully the last, albumin transfusion on Wednesday. We resumed the TPN last night, but he continued to retain much of the fluid. This retention makes him uncomfortable, and makes it more difficult to breathe. We are skipping the TPN again tonight, and hope that he has a dramatic improvement by tomorrow night after his third albumin transfusion. Tomorrow Connor will go back to clinic for a check up, platelets, bumex (diuretic) and albumin transfusion. Dr. Bostrom has ordered platelets that more closely match Connor's in hopes that they will last longer.

While Connor has been going through a pretty tough and uncomfortable week, we look forward to happy days very soon. We are thankful that his labs show that all of his organs continue to be working effectively, and the chemo has kept his white count down to 0.2K based on his counts on Monday. We are very thankful that we have been given some added time to spend with Connor. We are cherishing every moment of it!

Thanks for all of your continued support and prayers. They are working!

Sunday, February 15, 2004 10:35 PM CST

The good news is that Connor has not had another bloody nose since the rhino rocket was remoived on Wednesday! The bade news is that Connor hasn't been feeling very well. We finally uncovered that his diarrhea was being caused by a Clostridium Difficile infection in his GI tract, so we started him on Flagyl. Connor's diarrhea has slowed down, but the discomfort of the effect it has had on his bowels still lingers. Connor received 1/2 a unit of platelets on Friday, along with some more Velcade and Vinblastine. He was also started on some TPN to increase his nourishment since he hasn't been eating. Saturday we spent all day at St Paul Children's getting a blood transfusion, and a full unit of platelets. Connor has been retaining too much of the fluid intake he has received from his transfusions and TPN, so he received a dose of Lasix today. We are also skipping the TPN (IV food) tonight. Tommorrow he is scheduled for some more Velcade and platelets. They are also going to expand the labs they are doing to try to uncover how his Clostridium Difficile infection is doing, as well as the cause of him retaining too much of his fluid intact. His counts remain pretty decent, with Saturdays counts showing a white blood count of 1.1K, with blasts back up to 55%. We are hoping to keep his bloody noses away, and improve his GI situation, so that he can feel better.

Thursday afternoon Goldy Gopher came to visit Connor at our house! (I will try to get a picture from the visit uploaded to the site in the next couple of days.) Connor also received a surprise early birthday gift of toy RV's from Majestic RV in Ham Lake. This is the group we rented the RV from a few weeks ago. They are all very kind at Majestic. In fact, when I originally called to rent the RV from them, they were a bit surprised that I planned on parking it in my driveway for Connor versus taking a trip like their typical customer. I explained Connor's situation, and how after seeing all the campers at the Sportman's Show, he really wanted to buy one. The next day when I went to pick it up from them, they had loaded it up with snacks and pop and said that the weekend was on them! Acts of kindness like this, from complete strangers, continue to amaze us. This type of kindness continued soon after at Connor's surprise birthday party at Chuckie Cheese's on Robert Street. After finding out the reason for the surprise party, the manager decided not to charge us for anything associated with the party! These are just two quick examples from many that we have experienced. It truly goes to show you how many caring, kind, and big-hearted people are out there.

Wednesday, February 11, 2004 9:46 PM CST

Connor received another platelet transfusion on Monday. We also started him on some Novoseven, which is an IV push medication that helps with clotting. This added to the Amicar he is already on, will hopefully solve his nose bleeds. Connor hated having the rhino-rocket in his nose. He wouldn't eat, and he would barely drink. By Tuesday we were systematically squirting syringes of Gatorade in his mouth throughout the day. We are trying to keep up with the diarrhea he has had for almost a week now.

Tuesday night was a rough night for Connor. He woke up in the middle of the night in a lot of pain. The Vioxx didn't touch it, and adding Tylenol finally allowed him to fall back asleep. The hospice nurse came out this morning for his platelet transfusion, and she had no idea of what could be causing the pain. By now, the combination of Vioxx and Tylenol was not enough. When Connor complains of pain, it is real! We ended up going to the Short Stay unit at Minneapolis Children's for some morphine and a work up to see what the cause of the pain could be. We were a little concerned, among other potential causes, that he may have developed a clot from the Novoseven that he had started to take. X-rays showed that his colon is inflammed, and when it has spasms, it must be pinching a nerve that sends pain to his side and shoulder area. The swollen and inflamed colon may be caused by the Velcade, vinblastine, clostridium difficile infection, or possibly even a virus. Connor was also dehydrated from his lack of eating and drinking. We spent the afternoon getting fluids, and finally getting the rhino-rocket removed from his nose. That immediately improved Connor's outlook on life! He even requested some lemonade to drink, and told us what he wanted to eat for supper! It is amazing how much joy simple requests like that bring to us. We were sent home with some oral morphine for the pain. We will also be giving Connor IV fluids tonight. Starting tomorrow night, he will get TPN (IV food)through the weekend. We have also sent in a stool culture to try to determine what may be causing his diarrhea and colon problems. We are confident that filling him up with more fluids and the nourishment of TPN, will allow him to feel much better. In fact, he was back to pulling some pranks on us tonight after getting some fluids this afternoon. By tomorrow, minus the rhino-rocket in his nose, he should be ready to play with some friends again.

Connor's counts today showed that his white count was now 0.7K. His blasts were down to 22%. Dr. Bostrom continues to be very surprised at his positive response to the Velcade/vinblastine combination. Connor's toughness may just allow him to reach his real 6th birthday on February 25th. Connor's ability to reach this milestone was out of the question just a few weeks ago. With all of your support and prayers, I am betting that it will become a much celebrated reality! We will be cherishing every single moment until then.

Sunday, February 8, 2004 10:23 PM CST

Connor receieved more transfusions and another dose of Vinblastine on Thursday. He also started another round of Velcade. The blood transfusion dramatically improved is hemoglobin, and he immediately perked up with more energy! The blood transfusion also made him look a lot healthier because it pinks up his skin after being pale with a low hemoglobin count. His counts came back showing that his white blood count had now dropped to 2.2K and his peripheral blasts were now down to 60%!

Friday morning Connor woke up insisting that he get a hair cut right away. Patty Gustafson, after hearing Connor begging for one while talking to Tammy on the phone, came to the rescue and gave him a hair cut. Connor looked very handsome afterwards! Connor spent the afternoon playing at his friend Alec's house.

Saturday morning Connor received another platelet transfusion. His blood counts showed that his white blood count was now down to 0.7K and his peripheral blasts had dropped down to 24%! Connor was in a great mood all day long. We went shopping to pick up some more projects for him to do at home. He took a nap late in the afternoon. Unfortunately for him, he woke up to a pretty good bloody nose on his left side. We had to take him back in to the ER at St. Paul Children's. It took longer than expected to get through all of the crowds near the Excel Energy Center for the Ice Castle and All-Star Hockey Game events. Connor had to have another Rhino-Rocket placed in his nose. He also received a full unit of platelets. We didn't get him home until 1:00 am. Right now he is very depressed about the Rhino Rocket sticking out the end of his nose. He doesn't want to play with any of his friends because he doesn't want them to see him like that. He will most likely get the Rhino Rocket removed on Tuesday in the ENT office, and we will just have to see what other steps we may have to take to prevent this from happening again. Connor handled this most recent episode very bravely. He knew how unpleasant it was going to be from last weeks experience, but he continued to cooperate and remain strong throughout the whole night. He definitely fits the name given to him during the Knighting ceremony by the Vulcans, "The Prince of Courage". He is a tough kid who continues to fight his ultimate battle. He is doing better than anyone could have predicted a few weeks ago. We are very greatful to be able to enjoy this additional time we have been given. We are hopeful that we can put an end to his nosebleed issues, so that Connor can better enjoy the time he has courageously fought for.

Wednesday, February 4, 2004 11:15 PM CST

Connor received another double platelet transfusion Tuesday to prepare him for the ENT appointment today. His counts showed that his white count was now down to 3.6K, and his hemoglobin was only 7.9. Based on the low white count, we are now stopping the hydroxyurea, and have scheduled both a blood and platelet transfusions for tomorrow. Today was a big day for Connor, because he finally had the packing (rhino rocket) in his nose removed. Dr. Cox was pretty concerned going into the procedure, and he had two nurses come in to help out in case Connor's nose starting gushing right away. We were all very relieved to discover that his nose did not bleed, and that the extra platelets and Amicar (a drug that helps you clot) seemed to allow the sore in his nose to clot and heal. We are hopeful that we can control is nosebleeds with platelet transfusions scheduled for 3 times a week now, continuing the Amicar, and spraying Afrin in his nose a few times a day. Tomorrow, along with his transfusions, he will receive his next dose of Vinblastin, and the first dose of his next round of Velcade. Connor has also been running a low grade fever (100-101.8) the last few days, so we are keeping our eye out for any signs of an infection. So far all of his cultures have come back negative.

Connor social life has been pretty calm the last few days. He didn't want any of his friends to see him with the string of the rhino rocket hanging out of his nose. His low hemoglobin has also had him feeling pretty tired as well. As soon as he got home from the ENT office, however, he was begging to go to a movie with some friends. What Connor wants, he seems to get these days, so he went and saw the movie "Teacher's Pet" with a couple of friends. We continue to be impressed with Connor's toughness as he battles his relentless leukemia. He continues to have a great sense of humor, loves to play tricks, and faces each day with a great attititude. All of your support and prayers defintely gives him the strength he exihibits each day. He feels very special with all of the attention he receives.

Monday, February 2, 2004 9:38 PM CST

Connor had the hospice nurse come out again Friday for another dose of vinblastin, a platelet transfusion, and to check his counts. We were very encouraged to discover that his white count had dropped down to 4.6K, and his peripheral blasts were down to 63%. Both of these numbers are the lowest he has seen in quite some time. Dr Bostrum was very suprised and pleased to see this response. He felt that some of the result may be from a delayed effect of the Velcade in combination with the vinblastin. Therefore, we will be adding another round of Velcade starting next Friday. Unfortunately, the drop in these counts have not been accompanied by an improvement in Connor's ability to produce his own platelets and other blood products. Connor's bone marrow is still very much saturated with leukemia. His platelets by Friday were down to 11K, and his hemoglobin was now down to 8.4. Connor lost a step in his energy level on Saturday, most likely from the vinblastin he received on Friday. He still managed to play with his friend Matt most of the day, and the Josh that night. Sunday morning, Connor was feeling a bit better. While eating breakfast, however, he sneezed and appeared to blow out the gauze protecting the sore in his nose. A sneeze about a half hour later set off a vicious bloody nose. We had to take him to the ER to get it stopped. They were finally able to plug it up with the second "rhino rocket" (A plug that is shot into the nose with an applicator. It quickly expands to provide local pressure to help stop the bleeding). Connor's blood counts at the ER showed that his platelet level was already down to 9K, and his hemoglobin after all of his bleeding, was down to 7.2. We were moved to the short stay unit to get a double dose platelet transfusion, followed by a blood transfusion. This little escapade started at 10:30am, and we did not get home until almost 9:00pm. Connor was still pretty wiped out from this experience today, and he spent most of the day on the couch watching TV. We had a follow-up ENT appointment in the afternoon. Dr. Cox, based on Connor's history, wants to keep the rhino rocket packing in his nose until Wednesday. We will have the packing removed Wednesday morning, and if any complications occur, we will go right to the hospital for some surgery.

Connor was a big spender today. He saw an ad on TV for some Kid Cuisine frozen dinners. He insisted that we stopped at the grocery store on our way back from the ENT appointment to buy some of these dinners with his own money. When we got there, he grabbed his own cart, filled it with 3 of the dinners, some fruit roll-ups, kool-aid jammers, and some cereal. When we got to the check-out line, he insisted that he buy all of these groceries with his own money. The lady at the check-out was very impressed with his determination, and he was very proud of himself for buying his own groceries! It was a pretty cute scene!

Sorry for the delayed update. I will try to keep up better. If you haven't looked at the pictures recently, check out the one of Connor with the Vulcans. I heard that the knighting of Connor was announced at the annual Vulcan banquet this last Saturday night. They talked about how much it meant to them, and how it touched them to make such a meaningful visit. It may have been touching for them, but it was a fantastic, unforgettable experience for Connor and our whole family. It will provide us with another wonderful, lasting memory.

Thank you for your continued support and prayers!

Wednesday, January 28, 2004 9:54 PM CST

Connor had a nurse come to the house yesterday for a platelet transfusion, and to take his basic counts. We finally got some encouraging news about his counts. His white blood count droppe from 65K down to 10.9K. His peripheral blasts dropped from 90% down to 74%. His hemoglobin remained pretty stable at 9.2. The vinblastin, or the combination of vinblastin the day after his last dose of Velcade, appears to have bought Connor some time. Connor's white count has not been as low as 10.9 for weeks! Overall, Connor continues to feel pretty good. The hospice nurse was surprised to see him upright, laughing, and playing board games with his Mom while getting his transfusion. Most kids at this stage are pretty lethargic.
Dr. Bostrom and his nurse Sarah were very pleasantly surprised to see his white count drop with vinblastin. We can only hope and pray that he continues to respond when he receives his next dose this Friday. Connor's bloody nose improved some after his platelet transfusion. This morning, in fact, was the first day he didn't wake up to a bloody pillow. We brought Connor to see Dr. Malone (an ENT) to get her opinion on what we could do to stop the continuous bleeding. She cleared each nasal passage of very large blood clots, and placed a dissolving mesh gauze over the affected areas. This mesh will help suppress the bleeding, and provide a better foundation to form a clot. It will then dissolve on it's own in about a week. Connor didn't care for this procedure, but it appears to be working so far!

This morning was a big event for Connor. The St. Paul Winter Carnival Vulcans came to our house to Knight Connor! (The Vulcans are affiliated with the Winter Carnival. They fight the King and Queen of the Winter Carnival in order to end winter so that spring and summer may come sooner). They arrived at our house with sirens blaring in their fire truck. They all (approx 10) came inside and knighted Connor the "Crown Prince of Courage"! The ceremony included the typical waving of the sword, flames, and drawing a mustache on Connor. Connor also received a certificate to prove to everyone that he has been knighted! Connor was thrilled, and he has carried the certificate, as well as the other buttons and cards they gave him, around the house all day.

Thanks for your continued support and prayers. Every bit of it helps! I wish I could list all of the people that continually help us out at home, help set up all of the special events Connor has experienced, or have unexpectedly donated their time and/or services in the name of Connor. The list would be extremely long, and I would be afraid I would accidently overlook someone. Connor's battle has truly shown us the good, generous, and caring side of all of you. I am amazed how this young boy, mature beyond his years, has brought so many people together, and reminded so many people what is truly important in life.

Monday, January 26, 2004 10:03 PM CST

Connor continues to fight the battle bravely. Friday's appointment showed that his white count had risen to 65K. He got a platelet transfusion, and they scheduled hospice care to come to the house on Tuesday (1/27) to provide a follow-up transfusion. Connor also got a dose of vinblastin, which is a weekly form of vincristine. This is the last option for Connor, so we pray it provides him some additional quality time. We also said good-bye to the clinic on Friday. From now on, Connor will receive the bulk of his care through the hospice nurses.

Connor was in a great mood Friday. He had his friends Matt and JT over to play Friday night. Saturday was a tougher day for Connor. He woke up with a fever, he was experiencing a lot of bone pain, particularly in his hip, and his bloody nose would not go away. We have added Amicar to his drug regimine to help him clot better. Sunday Connor woke up and was a new boy. Outside of his bloody nose, he felt pretty good. Connor's "girlfriend" Tessa stopped by on Sunday and they had fun playing some dancing games, and PacMan. Connor continued to feel pretty good today. His friend Alec came over to the house to play, and they were running all over the place. Connor likes to play hide and seek non-stop. Everytime someone new enters the house, he hides from them and expects them to come looking for him.

The hospice nurse will be coming to the house tomorrow for another platelet transfusion. She will also be checking his hemoglobin to see if he needs a red blood transfusion as well. We have an ENT appointment scheduled for Wednesday afternoon to see what we can do to get his nose to stop bleeding.

Thanks to everyone for your continued support. We are amazed each day at the kindness of our friends, as well as strangers.

Friday, January 23, 2004 9:30 AM CST

Connor's white blood count shot up to 75K again on Monday. Based on this, we doubled his hydroxyurea. Wednesday's counts showed that this plan worked a bit because his white blood count dropped down to 32K. Yesterdays clinic visit brought more disappointing news that his white count was back on the rise at 50K. We finished his series of Velcade infusions, and are scheduled to go in today to start vinblastin and and get a platelet transfusion. Dr. Bostrom does not hold out much hope for vinblastin, especially since any response we have seen with everything we have tried so far has brought minimum relief. We continue to hope and pray that the vinblastin will provide some additional quality time for Connor.

Speaking of quality time, Connor has been enjoying alot of it this last week! The big event was his surprise birthday party at Chuck-E-Chesses on Wednesday! When he walked into Chuck-E-Cheeses he thought he was going there to play with a couple of friends and scope it out for his upcoming birthday party. When he walked to the back, however, he was met by over 75 friends, families and parents to the "Happy Birthday" song. Connor started out a bit shy, and confused because until this point in his life he has never known what a surprise birthday party is. Now that he knows, he loves them! It was pure joy watching him play with all of his friends! It was also good for a lot of his friends to be able to spend some time with him as well. The outpouring of support for this event was amazing, considering it was barely posted on this web site in time. Connor's "Radiation Buddy", Brad Pint even made this celebration. Thank you to everyone for making this a very memorable event for Connor and our family.

We have also been busy going to pet stores. Connor really wants a pet so we have to look around to see what kind of pet he really wants. So far he seems to have narrowed it down to a turtle, rat, or weener dog. With those great choices, we have been trying to pursuade him back to the days when he wanted to get a cat and name her "Cutie".

Thanks again for all of your support and prayers. All of it helps us cope with what we have been through, what we are going through, and everything that lies ahead...

Monday, January 19, 2004 6:24 PM CST

Friday morning Connor woke up with a temperature of 100.7. That meant that he had to go into the clinic to get checked out, and get some antibiotics. He also received a blood transfusion which really picked him up. His counts that day showed some promise of the hydroxyurea working because his white blood count finally stalled and dropped a bit from 75 to 57. Saturday, after the home nurse stopped out for blood samples, we were even more pleased to see that his white count had now dropped down to 23. Today we went back to the clinic for is next dose of Velcade. Connor has been feeling pretty good, so we were looking forward to getting good counts. Unfortunately for Connor, his white count has jumped back up to 75, and he is in need of another platelet transfusion (which the home nurse is giving him right now as I type this.). Dr. Bostrom still thinks we should stay the course on Velcade until Wednesday, and we have now doubled his hydroxyurea to try to lower the white counts again. If Wednesdays counts are bad again, we will be switching to vinblastin.

Connor had a great time this past weekend! He was extremely excited to get home from the clinic on Friday to see the big RV parked out in his driveway. He had his buddies Alec and Matt sleep over in it on Friday night. Saturday, Connor had more friends, cousins, and neighbors come over to play in the camper. Saturday night we had a family sleep over. Sunday, it was back to more friends coming over to play in the camper. They took imaginary trips all over the country! Having the RV "playhouse" gave Connor extra energy this weekend, and allowed him to spend some quality play time with his friends, family, and neighbors.

Connor's birthday is coming up on February 25th! He will be six years old! Unfortunately for Connor, the strength of the cancer growing in him will most likely prevent him from seeing and enjoying that day. Some friends of ours have decided that he should still get a birtnday party, so they are organizing a surprise birthday party for him this Wednesday, January 21st. It is going to be held at Chuckie Cheeses at 1422 South Robert Street in South St. Paul from 1-3pm. Anyone who is interested is more than welcome to come. If you are unable to make it, but would like to send your well wishes to Connor, send any message and/or pictures to Patty Gustafson at "mandpgus@aol.com". She will be creating a card that will incorporate these messages for Connor. This is a surprise party, not even Johnny (his brother) knows about it yet!

Thanks again for all of your support and prayers. Connor truly feels special with all of the attention he is getting, and all of the messages he receives on his website. I have updated a few pictures, including a recent potrait of Connor, as well as a couple pictures from this past weekend with the RV!

Thursday, January 15, 2004 9:26 PM CST

Connor went to clinic today to get his next dose of Velcade. The counts we got today paint a pretty dismal picture. Connor's white count jumped to 41 yesterday, and 75 today. His blasts are up to 87%. His hemoglobin continues to drop, and he will receive a blood transfusion tomorrow. We had to have a difficult discussion today with our physician on what lies ahead, most likely in the very near future. We will not give up trying to treat him with his chemotherapy, but we had to plan out his comfort care. Dr. Bostrom added hydroxyurea to the Velcade. He is hoping that hydroxyurea will lower his white count enough to provide a fighting chance for the Velcade to show some activity. If things continue to to spiral downward the next couple of days, we will add vinblastin to the mix on Saturday. Today, to say the least, has been very difficult for us to swallow. We will, however, remain optimistic that these new combinations will offer Connor some lengthy quality time.

Connor didn't feel well enough to go to school today. He did, however, spark up enough tonight to play hide and go seek. We are hoping that he feels well enough this weekend to enjoy his "destiny" (his discovery of wanting to camp in an RV after going to the Sportsmen show last weekend}. Tomorrow, we are going to pick up a 29 foot RV that we have rented for the weekend. It will sit in our driveway most of the weekend, plugged in to our house, providing Connor and his friends the ultimate playhouse. Connor is very excited about this! As long as he is up to it, there will be camper sleepovers with his friends this weekend!

Thanks for your support and prayers. They are needed, welcomed, and very much appreciated.

Monday, January 12, 2004 9:13 PM CST

Connor returned to clinic today to start his trial of Velcade combined with steroids. We are praying this will work for a while. His counts continue to deteriorate. His white blood count has now climbed to 21, his blasts are at 74%, and his platelets have already dropped to 18K after being at 57K after his platelet transfusion last Thursday.
Connor will get 3 more infusions of the Velcade (Thursday, next Monday, and next Thursday). We should then be able to evaulate whether or not he is a responder to it. It it works, he would be eligible for another round of it starting February 2nd. Connor is also already scheduled for another platelet transfusion this Wednesday.

I was able to do some research and find another new medication, clofarabine, which has had some positive results in limited trials. Dr. Bostrum has e-mailed the lead investigator of this drug to see if there are any more trials, where they are being done, and how we might be able to get involved. We will cross our fingers....

Connor continues to feel pretty good. He was able to go to school on Friday. Saturday afternoon he went to the Sportsman Show at RiverCenter. He spent the afternoon with his friend Alec climbing in and out of all of the campers. He enjoyed it so much, that we had to go back again Sunday. Connor really wants a "driving camper", and after going through one of them toward the end of the day he claims to have "found his destiny". He really liked one of the 30 foot RV's and insisted that we need to buy it. After "reasoning" with him for a while, we were able to convince him that we should rent it first to see if it is what he really wants. We plan on renting one in the next few weeks, parking it in our driveway, plugging it in, and letting Connor have a sleep over in it. The rest of the weekend we will just drive around town, and let him play in back. Connor is excited to go back to school tomorrow to be with his friends. Today he wrote a book with Tammy about the ultimate crime fighting team of the Hulk and Sponge Bob. According to the cover of the book, it is rated PG13, and is available in all of your local stores.

Thanks again for all of your support and prayers. We are amazed everyday at all of the kindness shown by all of you.

Thursday, January 8, 2004 9:40 PM CST

Wednesday we went in to start our next round of Combotox. The initial news was good when we had his counts checked. His blasts dropped back to 62%, his hemoglobin stayed at 12.2, and his white count dropped to 10.9. Connor unfortunately had a bad reaction to the higher dose of Combotox. He ended up sleeping most of the day after receiving a very high dose of Benadryl to counteract his reaction. Last night he ended up spiking a stubborn fever of 102 degrees. Since it wasa persistant, we had to bring him back to the clinic today. Dr. Bostrom, in the mean time, had received an e-mail from the study coordinators informing him that some of Connor's blood work had shown that his immune system had developed antigens to the Combotox. This immune response is what most likely caused his reactions yesterday, as well as his persistant fevers. Based on the development of theses antigens, Combotox is no longer an option for Connor unless his immune system is ravaged to a point where these antigens completely disappear. This news was very disappointing to us, because we have now lost one of the potential weapons to keep Connor going. To make matters worse, his blood counts came back showing that his hemoglobin dropped from 12.2 to 10.8 in one day, his platelets dropped from 16K to 9K, resulting in the need for another platelet transfusion. The only good news was that his white blood count dropped again to 9.8. Dr. Bostrum feels we need to start our next phase of drugs on Monday. We will be trying Velcade (a chemo recently approved for multiple myeloma), combined with steroids. This combination will be one of our last hopes. His liver functions continue to get worse, so it looks like the potential trial drug at the University will not be an option.

The good news for the day is that by tonight, Connor's fever seems to be under control, and he spent the night playing with his brother. We are hoping that he feels good when he wakes up tomorrow morning so he can go to school. He was very upset this morning when he had a fever and had to go to the clinic instead of school today.

Monday, January 5, 2004 9:30 PM CST

Connor still feels good. He is eating well, and has pretty good stamina. Unfortunately, his counts have been moving in the wrong direction since my last update. Connor's white blood count went from 4.4 on Wednesday to 8.8 on Saturday, to 16 today. His peripheral blasts have grown from 24% on Wednesday, to 58% on Saturday, to 78% today. His platelets went from 33K on Wednesday, to 20K on Saturday, to 18K today. His hemoglobin has stayed strong from 12.3 on Wednesday, to 11.2 on Saturday, back to 12.2 today. We are looking forward to this Wednesday when he can start his next round of Combotox to try to tame this fast growing cancer. He will be receiving a 20% higher dose of Combotox this round, which will hopefully provide a significant response. This dose has only been tried in adults so far, so we are hoping that he is able to tolerate it.

Connor had another fun weekend playing with his friends. He had his friend Matt Wahl sleep over on Friday night. They made sure they stayed up until midnight. Connor went to the Cat in the Hat movie again with his friend Ben. Today he went to his third day of kindergarten. He insisted on taking the bus both ways, even though Mom suggested driving him and his brother to avoid waiting outside in this subzero weather we are having. When asked what he learned today, he only tells us that he knows that 3 plus 3 equals 6. He is really excited to go to school again tomorrow! Connor has been begging to go for a picnic. To fulfill this request,Tammy took Johnny and Connor to pick up Taco Bell tonight, and then met their friends Ty, Kayla and Jenna at Central Park (an indoor park in Woodbury) for a picnic. They all went to the library afterwards to pick up some books. Connor then went to bed without a fight because he knew that he needed to get a good nights sleep for school tomorrow. He really enjoys school, and we are hoping that he continues to feel well enough to attend.

Thank you all for your continued support and prayers.

Thursday, January 1, 2004 9:13 PM CST

Happy New Year! We hope everyone is ready to have a great 2004!
Connor continues to feel pretty good! He gets tired pretty quickly, but his spirits remain high. We went in for counts and a check up on Wednesday. We were very pleased to see that his hemoglobin remained high from the transfusion Monday (12.3). His platelets also were still up to 33, so Dr. Bostrom felt he must be making some on his own to supplement the transfusion. When his differential counts came back we were very pleased. Connor's white blood count (WBC) had dropped to 4.4 (from 5.8 on Monday), and his peripheral blasts dropped to 24% (from 58% on Monday). This defintely showed that Connor did have a partial response to the Combotox we are trying. Dr. Bostrom also received approval to try a higher dose of Combotox for the next round. This higher dose will hopefully provide a better response than the first round he received. Dr. Bostrom was unaware of anyone else ever trying this dose so we will have to watch for side effects closely. Connor will get three four hour infusions on Wednesday January 7th, Friday January 9th, and then Sunday January 11th. This round will be followed up by another bone marrow test on January 21st to help determine his bone marrow response to this round.
While the news for Connor on Wednesday was good, it was not good for his Grandpa Hyde. Grandpa Hyde was pulling cousin Jack on a sled on their lake when he slipped and hurt his leg. An x-ray Wednesday morning confirmed that he had boken a bone near his ankle. He will be meeting with an orthopedist next week to determine the best means to treat it.
Connor celebrated New Year's Eve primarily at home with his family, Grandpa and Grandma Hyde, Aunt Tracy and Cousin Jack. He also made a quick visit to a neighborhood celebration. He liked the fireworks show that our neighbor "pyro" Joe put on for the neighborhood. He made sure he stayed up to watch the ball drop at midnight! By 12:00.01, he was fast asleep on the family room couch.

2004 will provide a lot of challenges for us. We are certain we will be fine, based on all of the wonderful support you all showed us in 2003. Thank you, and we hope you all have a wonderful and healthy 2004!

***I have updated the pictures**

Monday, December 29, 2003 9:03 PM CST

Connor had another bone marrow biopsy today. He still has 86% blasts in his bone marrow, and 58% blasts in his peripheral blood. We were finally able to speak with Dr. Bostrom today to get his opinion on how Combotox has been working, and if we should try another round of it. He felt that Connor has had a partial response to it because he hasn't had any dramatic increase in blasts from when he started the Combotox, and his white blood count (WBC) has remained low (WBC was around 7 at the start of Combotox, dropped to 3.8, and today was at 5.8). He felt that we should try another round of Combotox starting next Wednesday, possibly at a higher dose if he gets approval to do so. The cut off point, saying that the drug has failed and we need to move on to something different, would be when his WBC reached 75-100. We are hoping that our next round of Combotox provides better results since this drug is the best option we have right now to extend his life. We will go in for our next counts this Wednesday. Connor's hemoglobin and platelets have been dropping, so he received transfusions of both red blood cells and platelets today.

Tonight was a big night for Connor! Connor returned to the SportsBarbers for a hair cut for the first time since getting his head shaved with his buddies last summer. Look out Woodbury.....handsome Connor is now roaming the streets! Connor brought a camera with to take a picture of the picture hanging on the wall at the SportsBarbers. The picture is from the day that Connor and 4 buddies and his brother all had their heads shaved there. They all posed with the owner, Jason, who had the honor of shaving all their heads, and who also was nice enough to provide a cake to celebrate the occassion.

Thursday, December 25, 2003 9:16 PM CST

Merry Christmas everyone! It has been wonderful having Connor home since Monday night. He still feels pretty good, so he was able to enjoy Christmas like every little boy should be able to. Johnny and Connor did get into a bit of an argument Christmas Eve. Johnny wanted Connor to go to sleep so that Santa wouldn't pass up our house. Connor, on the other hand, kept pretending he was Santa by saying HO Ho Ho, and ringing bells. Johnny got pretty nervous that Santa wouldn't stop because they were still up. After explaining to Johnny and Connor that Santa wouldn't be by for another few hours, Connor gave up his joking around and they both fell asleep. Connor spent Christmas eve at the Aunt Kathy's house with the Stokes side of the family. Santa was nice enough to stop by for a personal visit and bring all of the kids a present, a candy-cane, and Christmas bells! Christmas day was spent as a family at home, playing with all of the new toys. Connor and Johnny were amazed to find one of the reindeer's antlers had fallen off in our front yard near some bells! They think it may have come from Rudolph, who they know was leading Santa's sleigh after following his travels on "noradsanta.org". Tomorrow Connor will celebrate Christmas with the Hyde side of the family once Aunt Tracy flies in from California.
As I mentioned earlier, Connor was finally released from the hospital on Monday. We are still watching and waiting to see if he is positively responding to Combotox. His bone marrow test Monday showed 90.3f blasts in his bone marrow still. His peripheral blast count keeps bouncing around from 26 unday, to 40onday, back to 26uesday, and 38ednesday. We will get his next counts sometime tomorrow night. He is scheduled for another bone marrow test this next Monday. Our understanding is that the final determination of whether or not the drug is effective is decided on day 15 after starting the first infusion. The physician in charge of this study drug has been on vacation all week, so we have not been able to get an interpretation of Connor's varying response. Nobody else really knows too much about Combotox, so it has been a bit frustrating for us to get answers about anything this week.
Connor did have a surprise visitor in the hospital on Monday afternoon. Some man that looked kind-of-familiar in the face, but who looked a lot different with hair stopped by...Brad Pint, Connor's radiation buddy! It was great to see him and meet one of his son's. Connor also had Brad Bombardir of the Minnesota Wild stop by to see him Sunday morning. Brad's son goes to school with a couple of Connor's friends (Matt Wahl , Josh Woodbeck). His son got tired of hearing them talk about Connor all the time so he decided that he wanted to buy Connor a Christmas present, and visit him in the hospital so he could finally meet him. Brad was nice enough to come along and fire the kids up. He was also nice enough to stop by another boy's room who was feeling too sick to leave his room.
Thanks again for all of your support. I hope all of you are having a wonderful Christmas and Holiday Season. You all deserve one after all of the kindness you have shown us this year.

Sunday, December 21, 2003 8:33 PM CST

Connor continues to handle the Combotox with very little side effects. All he has been getting is a fever during the transfusion, and that is about it. Connor is getting his last transfusion of this round as I type this information in. The good news is that it appears to be slowing down the progression of Connor's cancer (This is my opinion, not confirmed yet with his doctor). The reason I say this is that the blasts in his blood (immature white cells caused by his leukemia) have finally begun to decrease. The numbers of blasts for this last week are as follows: 19%Wednesday, 40% Thursday, 55% Friday, 57% Saturday and then finally 26% this morning. His hemoglobin has also showed some improvement after dropping to 8.6 on Thursday, rising to 9.9 this morning. We are very excited that this should provide Connor some extra time of feeling pretty good, especially over Christmas. Connor will most likely be having another bone marrow test tomorrow to see what immediate effects Combotox may show. Since he has so far had some improvement I am guessing he should qualify for another round of Combotox in a 2-3 weeks. This will all have to be confirmed after speaking to our doctor, which we haven't spoken to in a few days. Connor should be able to leave the hospital either tomorrow afternoon, or first thing Tuesday morning. Connor leaving the 8th floor will be good for both Connor and the nurses. Connor has felt good this stay, and is only hooked up to an IV for 4 hours every other day. That allows him the freedom to run around the floor and terrorize the nurses. He has had alot of visitors this stay, which has really helped pass the time of day. When his friends visit, Connor likes to get a variety of snacks from the snack machine and start a party in the family visitor lounge.
Thanks again for all of your support! I hope everyone has a great Christmas and holiday season. We will cherish this Christmas, and celebrate this temporary success with Combotox!

Thursday, December 18, 2003 8:32 PM CST

Connor started the Combotox last night without any big side effects yet. He still feels pretty good, and had a good day playing at the hospital. His favorite game is playing hide and seek around the 8th floor of Children's Hospital. Connor has many vistors today, including Aunt Eileen, cousin Sandra, Grandma and Grampa Hyde, Grandma Stokes, Aunt Kathy, Jenny Wahl, and his friend Matt Wahl.
It was easy for him to play as well, since he wasn't hooked up to an IV all day. Connor had to stay at the hospital basically to be monitored for side effects that may occur with this new higher dose of Combotox that he has been placed on for the study. We are praying that it works to reverse or slow down his cancer. His final bone marrow results came in showing he had 90% blasts in his bone marrow, and 40% blasts in his peripheral blood. As a result, all of his good counts (hemoglobin, platelets, etc.) have been dropping pretty quickly. Outside of looking a little pale, Connor looks and acts remarkable well for his current condition. Connor will receive another dose of Combotox tomorrow, and we will continue to monitor his blood counts for any sign of it working.
Thank you for the continued outpouring of support. It truly helps us get through each day. All of the prayers and gestures of good will that we have received on a daily basis, gives us strength to know that we can make it through the difficult days that lie ahead.

Tuesday, December 16, 2003 9:30 PM CST

The last few days have been very fun for Connor. One big event occurred in the middle of the night on Saturday. At about 2:30am, Connor lost his first tooth! The Tooth Fairy was somehow quick enough to slip some golden dollars under his pillow by the time he woke up Sunday morning. Sunday afternoon he went to his cousins house to celebrate Grandma Stokes' and Sandra (cousin) birthdays! Monday morning Connor strapped on his Hulk backpack and boarded the bus with his big brother to go to his first day of kindergarten! Miss Anderson (teacher) and his whole class were very excited to see him. Johnny's class even came in to Connor's class for a few minutes to meet him! Connor went to his friend Alec's house to play after school. Monday night our whole family went with the Woodbeck family on a limosine tour of various Christmas Lights. Connor loved it, and spent most of the night hanging out the back window taking pictures. Tuesday morning Connor strapped on his Hulk backpack and went to his second day of kindergarten. The letter of the week at school is "L", so Connor brought lollipops for eveyone for show-and-tell.
Overall, Connor is still feeling pretty good. His energy level and spirits remain high. He is experiencing some leg pain, particularly at night that requires some pain medicine. Tomorrow (Wednesday) he will be admitted to Children's Hospital in Minneapolis to begin a trial with Combotox. He will get 4 hour infusions of Combotox on Wednesday, Friday, and Sunday. We are praying that it will keep the leukemia at bay for a while for Connor. Hopefully it will significantly reduce the amount of blasts in his blood and bone marrow, which should in turn reduce his leg pain. If this round of chemo works and he tolerates it well, he will get another round of it in a few weeks on an outpatient basis. If it doesn't work, the next step will most likely be trying out Velcade on a "compassionate care" basis.

Saturday, December 13, 2003 3:16 PM CST

Connor continues to feel pretty good. His only real complaints are some leg pain in the mornings. Connor's initial Bone Marrow test results showed that his relapse is coming on with some more vigor. He now has at least 45% blasts in his bone marrow, and 12% blasts in peripheral blood. His liver enzymes continue to be elevated, so he does not qualify for the U of M study we were hoping to get him into. Based on this, we have transfered our care to Minneapolis Children's to enter Connor into a different study with an experimental drug called Combotox. Connor will be part of the third phase of trying to find a dose that is safe and effective. Success for us now will be that Combotox, (and everything we try from now on) will keep his leukemia at bay to provide Connor some additional quality time. If his liver tests improve, going back to the U of M for the other study is also an option. Our goal now is twofold: (1) to let Connor enjoy the rest of his life to the fullest, and (2) we will try to extend it as far as we can with various medications, as long as they are not too toxic, or greatly diminish his quality of life. Connor will be admitted to the hospital next Wednesday to start the Combotox. He will receive it during 3 different 4 hour infusions which will occur on Wednesday, Friday and Sunday. He needs to be an inpatient so they can monitor Connor and see how well he tolerates it. If he tolerates it well, he will be able to get future doses on an outpatient basis. The following Monday he will undergo another bone marrow biopsy, and if all goes well he will be released Tuesday December 23rd. This timing will allow Connor to be at home for us to celebrate a very important and memorable Christmas as a family.
This next week is going to be very big for Connor! He will most likely experience two significant events for a young boy. First, in line with us letting Connor live life to the fullest, Connor will be boarding the school bus with his big brother on Monday to attend his first day of Kindergarten! Connor is very excited about this, and can't wait to surprise everyone when he walks into the classroom and takes off his hat to show everyone that he has returned with hair !(just like the Charlie Brown Movie "Why Charlie Brown, Why!"). The second event, which should occur sometime this week, is Connor will be losing his first tooth! He noticed this morning that one of his bottom teeth in the front is very loose. As you can imagine, this is very big for Connor, and he has spent most of today playing with it, and asking us what he should eat to make it fall out faster.
Thanks again for all of your support and prayers. The next few months will obviously be very difficult for us. Knowing all of you are there for us will definitely help! We are very lucky to know all of you!

Monday, December 8, 2003 9:44 PM CST

Day 101 post transplant! Sorry it has been so long since an update. There has been a lot of activity this last week, so I will give a brief overview of as much as I can remember, and will probably have to reflect more in future updates.
Connor was finally released from the hospital last Tuesday afternoon. His surgery to remove the infective port-a-cath went smoothly. Tuesday night we set up our Christmas tree. Connor and Johnny love to help set up and decorate the tree!Connor's appointment on Wednesday showed that he did not need any transfusions, and he was free to take his trip to Disney! Connor was very excited for the trip, and he was equally excited that his friends Matt and JT Wahl, and their parents Jeff and Jenny decided to take this memorable trip with us. We were able to change the dates of our trip to occur Thursday through Monday versus the original plan of Monday to Friday. Thursday we arrived at the Hotel, and went to spend a special night of "Christmas at Disney" at the Magic Kingdom. The kids were able to enjoy many rides and attractions with out many lines, and the night was capped off with a special Christmas Parade. Friday we headed to Cocoa Beach to introduce the kids to the ocean. Although the temperature was only in the mid 70's, they had a blast getting chased by the waves and collecting shells. Friday night was spent at Epcot. Saturday we went to Universal Studios. Sunday we had to go to a hospital in Orlando to get Connor's counts checked to make sure he would be safe to fly on Monday. We spent the rest of Sunday at MGM. The Tower of terror ended up being Connor's favorite ride. After our first ride on it, Connor was so scared he started crying at the end of it, but immediately joined his brother and friends and started begging to do it again! After the second run, he wanted a number of copies of a brochure featuring the Tower of Terror, and took at least 10 pictures of the outside of the ride so he could remember it later. The kids spent both Saturday and Sunday night singing Karoke at the hotel. Monday morning we stopped by "Give Kids the World". This was the beautiful resort we stayed at 2 years ago for Connor's Make-a-Wish trip. We wanted to see all of the changes, and to see the paving stones with Connor's and Johnny's names. After our Make-a-Wish trip, our families donated money to the resort, and Disney will then come out and place a paving stone on the grounds in honor of a child who has stayed there.
Our trip was tremendous and created a lot of great memories for us. Connor showed incredible stamina the whole trip, and was usually the last person awake each night. We allowed him to spend most of the trip without his mask. It was wonderful to see him running around, going on rides, and splashing in the ocean without the mask covering his beautiful smile. This was a trip we will truly cherish. I will try to update this site with pictures soon!
Tommorrow it is back to reality. Connor goes back to clinic for counts. Tammy and I wil be meeting with Dr Grewal (BMT) and Dr Weigel (experimental therapies). We will be discussing the trial that Connor may be getting into, as well as signing authorizations for samples to qualify him. Connor will have another bone marrow test, as well as a spinal tap on Wednesday to see how fast this relapse is progressing. We will get the results sporadically over the next week. These results will determine Connor's future treatments.

Monday, December 1, 2003 10:51 PM CST

Connor's fever finally broke Sunday afternoon! This was good news for Connor because he really didn't feel good since his fever hit Friday night. Connor is still in the hospital and should be released Tuesday or Wednesday. Some of the blood cultures they took from his port-a-cath came up positive for some gram positive cocci, most likely a Staph infection. (A port-a-cath is a type of catheter that Connor had implanted on the left side of his chest the first day he was diagnosed with luekemia almost three years ago. The easiest way to explain one is that it appears kind of like a bottle cap under the skin that has a tube attached that goes into one of Connor's veins. When Connor needed to be hooked up to an IV, instead of poking him in the arm, they could just numb the skin covering the "bottle cap" and then poke a special needle into the "bottle cap" giving him essentially painless IV access.) Connor has not been using the port-a-cath since he had a Hickman catheter implanted on the right side of his chest at the start of his BMT process. To maintain the usefulness of the port-a-cath for the future, it needed to be accessed and flushed out at least once a month. Tammy recognized that Connor always ends up in the hospital with a fever and some unknown infection soon after these monthly flushes. This observation seemed to fit this most recent admit after having his port-a-cath flushed Friday morning. Tammy explained her theory to Dr. Grewal, and he agreed that this seemed like more than just a coincidence. He felt like Connor probably has a lingering infection in his port-a-cath. Based on this, Connor is having his port-a-cath removed Tuesday at 11:15am. Connor should then get released from the hospital either Tuesday afternoon or Wednesday morning, as long as he does not have any more fevers or positive blood cultures. Connor obviously was not able to leave for Disney World this morning as had originally been planned. We changed the trip to occur this Thursday through next Monday, instead of today through Friday. This delay in the trip should hopefully give Florida the time it needs to rid itself of its recent cold snap and freeze warnings. We will be keeping our fingers crossed that everything works out, and we can get Connor down to Florida to immerse himself in Disney World and the ocean.
Thanks for all of your support and prayers. We continue to be overwhelmed by all of you! Our Thank-You list is infinitely long. We truly appreciate each individual act of kindness, and nothing is ever overlooked by us. We hope to catch up in our acknowledgments of thanks as soon as we can. In the mean time, we continue to focus all of our energy towards Connor's health, and to maintaining a somewhat normal life for Connor's big brother, Johnny. Thanks again, we couldn't get through every day without all of you!

PS. I updated some of Connor's photo's. I hope you enjoy them!

Sunday, November 30, 2003 8:05 AM CST

Connor had a great Thanksgiving! He had his Turkey dinner at home with his family and the Hydes, but also made a trip to his Aunt's house to play with all of his cousins. His check up Friday showed that his counts have remained basically stable. The very fast taper of his cyclosporine has not caused any severe Graft vs Host Disease either. This appointment also marked a major milestone for Connor. This would be his last official appointment with Dr Grewal at the University, until we transfer our care back to Children's Hospital to battle his relapse. We have made plans to go to Disney World and let Connor and Johnny see the ocean. We are currently scheduled to leave Monday at 7:30am, but we are working on potponing that departure for a few days. The reason for the delay is that Connor spiked a high temperature on Friday night so we had to bring him into the hospital. As of this morning, he still has a fever, so he will most likely not get released in time for the flight. The good news so far is that no bacteria have grown out of any of the blood cultures, and his sinus CT scan didn't show a sinus infection. He is probably just getting hit pretty hard with a virus that just has to run its course. Connor still has a pretty weak immune system, so it will take longer for him to fight this virus tham most people. Connor was admitted to section 4A at the University, which is the BMT transplant ward. He enjoyed seeing some of his old nursing friends again like Sarah O., Noel, AnnMarie and Cheri. They were all impressed with how much hair Connor has now! We also got a visit from Rosie and her Dad yesterday. Rosie looked great, and in fact she was released from the hospital later that day. We met Rosie and her family this last summer at Children's Hospital. Her younger brother used to come in Connor's room all the time to play with him. Getting released yesterday was a huge step for Rosie because after many complications she was finally healthy enough to leave after entering the hospital back in July! Way to go Rosie!
As always, thank you for all of your rayers and support!

Tuesday, November 25, 2003 10:28 PM CST

We met with Connor's BMT physician, as well as Dr. Weigle, who is in charge of all of the new therapy trials. We discussed the various options that Connor has at this point. One option would be to use the standard drugs that Connor has already tried. These drugs have gotten him into remission in the past, but have proven to us that they will not cure him. His body, which is still recovering from the bone marrow transplant, may not be able to tolerate the high doses that these drugs have been used in the past. If we did try these drugs, the best case scenario would be for them to help us keep the disease at bay for a while, however long that would be. The second choice would be to join a trial on a promising drug that works differently than all of the chemo drugs Connor has tried in the past. This drug is an oral pill taken once a day, that appears to be fairly well tolerated. If Connor is accepted into the trial, his arm of the study would look at a higher dose than has been tried in children in the past. In fact, the study only allows 3 kids in the country to be on the drug at a time. There is currently no efficacy data for children yet, but approximately 30% of the adults that have tried it have been able to get into a solid remission. The drug is too new to have any long term cure rates. This second option, trying a brand new therapy, seems to be the best route for us to take in order to have even the slightest of chances for a cure. In order to get into the trial, however, Connor will have to progress further into his relapse (shown by having at least 25% blast cells in his bone marrow), have a spinal tap to show he has not relapsed into his spine, and also have a healthy liver at the start of his therapy. They will perform another bone marrow test and spinal tap once they see Connor's peripheral blood counts begin to crash, which will hopefully show that he will qualify to be part of this study. This next test will most likely occur in the next two weeks.
Connor, in the mean time, continues to feel great! He has a lot of energy still, and we are trying to take advantage of it as much as possible. Monday we all went as a family to see the movie Elf. Today, Connor went to Chuck-E-Cheeses to play with a couple of his friends. He spent the rest of the afternoon at a friends house being a normal kid. We are looking into to taking a trip to Florida to let Connor revisit Disney World, and to finally see the ocean. (Keep this idea a secret since we are not going to tell Connor and Johnny about the trip until the last minute. We don't want to get them too excited for a trip, and then have to cancel it because of something that may come up with Connor's health.)
Thanks again for your support. It has truly helped us the last few days. Thanks to all of you who have put Connor on the prayer list at your respective churches. It seems that everyone I run into has told me that their church is praying for Connor. With all of the prayers from all of you, and the chance a trying a new drug, we are very hopeful that we will be celebrating Connor's health for years to come.

Sunday, November 23, 2003 5:07 PM CST

Friday we met with our BMT physician to get the results of the Bone Marrow test that Connor had on Monday. We were looking forward to getting good news. Unfortunately for Connor, the news was not what we wanted to hear. One of the test results showed that 2% of Connor's bone marrow cells contain the chromosomal markings of leukemia. Connor has officially relapsed. Relapsing this soon after his bone marraw transplant is also not good news. This means that the surviving leukemia cells are not only resistant to everything that has been thrown at them, they are also very aggressive. We were also told that the prognosis for patients in Connor's situation is very poor. The preparatory therapy for his transplant of heavy chemo and radiation is the limit of what a body can handle and recover from. Our are very limited. We are currently starting an extremely quick taper of his anti-rejection drug cyclosporine to the point of him being done with it by next Saturday. This will allow his donor cells to hopefully fight these leukemia cells, but put Connor at risk of severe graft vs host disease. To put this fast taper of cyclosporine in perspective, his original protocol had Connor beginning his taper after a 100 days post transplant, finishing it approximately 6 months later.
We are meeting with an oncologist at the U of M tomorrow to discuss what options they have for us. Our BMT physician did mention the possibility of a study drug with low side effects, but Connor may not be far enough past his transplant to qualify. Connor's bone marrow is still trying to recover from the transplant so he would not tolerate any intense therapy.
As parents, this news was very devastating. After bravely fighting for 3 years,Connor may be beginning to lose the battle. We will, however, continue to remain hopefull that he may get into a trial of an experimental drug that will help him. In the mean time, we will continue to cherish every moment we have. Connor has had a great weekend! He feels great, looks great, and he is having a lot of fun. Friday we took him to see the movie "The Cat in the Hat". Saturday, all of his Aunts and Grandma Stokes came to visit him. That night he had two of his good friends, Matt and JT, come over and play. Today, Connor was able to go outside sledding with all of the neighborhood kids in a neighbors back yard. Connor would not be satisfied any day without being able to play a chase game developed by him and Grandpa and Grandma Hyde. The stamina he shows while running circles around the house playing this game is amazing!
The road ahead is going to be difficult. We are going to have some tough decisions to make. We will remain positive for Connor. He is a special little boy that dreams of going to school, growing up with his friends, and experiencing all of the other joys in life.
Thank you all for all of the love and support you have shown over the last few months and years. It is because of you that we have been able to handle each day as it comes. Please continue to pray for Connor, he needs it more now than ever before.

Tuesday, November 18, 2003 7:25 PM CST

Connor was a brave boy once again going through another bone marrow aspiration on Monday. His back was a bit sore Monday night. He walked around the house with a make-shift cane. Today he felt great again and went to the new Looney Tunes movie with his friend Matt. He doesn't mind wearing his mask to the movies. He claims he doesn't like to eat snacks anyways because he wouldn't beable to hear the movie as well with all of that crunching. We got some initial results of yesterdays bone marrow test this afternoon. Connor has 5% blasts in his bone marrow (under 5% is considered normal). Some of these cells also look slightly abnormal. We will have to wait for some of the more specific tests to determine his percent of donor cells, and if any of these suspicious cells are indeed leukemic. We should get all of these results when we meet with his Dr. on Friday. While the news we received today was not the positive results we were hoping for, we are pleased that it was not dramatically bad. We are kind of in the same type of limbo that we were in before, in that the immediate results did not show an overt relapse, nor did it clear him.
We will just continue to pray and think positive thoughts until we get our final results later this week. In the mean time, we will continue to enjoy playing and spending time with Connor. He is feeling great, and he is full of energy! It has also been nice to have the whole family together at home for over a week now. This is the longest stretch for us since the middle of August. Connor's big brother Johnny continues to amaze us with how well he has handled all the stress the family has been through. Nights like tonight, laughing and playing with his brother at home, help all of us.

Sunday, November 16, 2003 7:07 PM CST

Day 78 post-transplant! This last week has been a very good week for Connor. He is eating well, drinking OK, but most of all he truly seems to be feeling better than he has since prior to his transplant. His energy level is way up too! Connor has accepted wearing his mask out in public more now, so he has enjoyed running a few errands with Mom. Tuesday he went to see the new movie "Brother Bear" with a friend. Getting out in the public like that really got Connor excited! Friday marked the milestone of the first time that Connor has shaved! As I have mentioned before, one of the side effects the the anti-rejection drug cyclosporine is excess hair growth. I am not sure if it has contributed to the hair growth on his head, but it has definitely increased the growth of hair over the rest of his body. Based on this, I finally took out the razor and shaved his side burns and fine hair on his cheeks. Some day Connor may try to show off and brag that he had to shave when he was only 5 years old! Today we were able to take advantage of a private showing of the Willy Wonka and the Chocolate Factory exhibit at Marshall Fields in Minneapolis. Children's Hospital set up this viewing for the families of the children being treated at their clinics and hospitals. Connor and Johnny even got to see Santa! (see updated photos). Tommorrow Connor will return to the University of Minnesota for another bone marrow test. We should get all of the results back by the end of the week. We will be praying that he still has 100% donor cells, less than 5% blasts, and no signs of chromosomal markers of leukemia in his bone marrow. I will post the results as I get them. We are confident the results will be positive, and that we will be able to finally put the scare of relapse we had to rest.
Tammy and I continue to be overwhelmed with all of the kindness and support that we have received throughout this whole journey. We will never be able to say Thank you enough to express our appreciation.

Monday, November 10, 2003 10:33 PM CST

Connor is back home again! Saturday the antibiotic sensitivities did not come back in time to release us. Saturday night we were able to look out our hospital window and watch the lunar eclipse! Connor was finally released Sunday afternoon. He will be on IV antibiotics at home for a week. It was great to finally spend Sunday night at home as a family, watching a movie, and enjoying Johnny and Connor teasing each other like old times. Connor had a good check up today. His appetite has really improved. We are actually going to try no IV fluids at night until his Wednesday appointment. If his labs remain good, he can continue sleeping throuhgout the night, without needing someone to help him go to the bathroom 2-3 times a night because of all the IV fluids he is taking in. Connor has felt great the last couple of days. His sense of humor and wit has returned! His gait has been affected by spending another week in bed at the hospital, but I think he feels so well right now that he will rebound quickly. I can honestly say that he has felt better the last two days than he has since he entered the hospital for his BMT in August. We are hoping that he will continue to improve on a daily basis, and his bone marrow test next week will finally clear him of his relapse scare.

Saturday, November 8, 2003 9:49 AM CST

Day 71 post transplant! Connor is still in the hospital, but we are very hopeful he will get out later today. Connor ended up getting Clostridium difficile associated diarrhea (CDAD). It is caused by all of the antibiotics that he has been on killing off all of the bacteria flora in his GI tract except for the Clostridium species of bacteria. The Clostridium proliferate and send out toxins that attack his GI tract, which then cause bad diarrhea. They have added Flagyl to his antibiotic treatment to try to fix this. Connor's blood cultures have also grown out what they believe is a form of Staph. We are now waiting for sensitivity tests to come back from the lab to determine what antibiotic (s) he should be on to take care of his infection. It looks like we will be able to go home on IV antibiotics once his treatment plan is developed. Connor has started eating better than he has the last few weeks. His energy is also picking up! It is nice to see him laughing and smiling again! Our next goal will be to keep him out of the hospital for more than just a few days.

Tuesday, November 4, 2003 9:01 PM CST

Day 67 Post Transplant! Connor had a pretty good check up on Monday. His counts are holding pretty stable, and np mpre blasts have been found in his peripheral blood. Dr Grewal did mention that he got a second opinion on his recent bone marrow biopsy. This second physician also felt that some of his bone marrow blasts look suspiciously like his relapse blasts. Even though all of the other tests have come back positive for Connor, Dr Grewal is still cautious is stating that Connor is clear of a relapse at this point. He has moved his next bone marrow biopsy up to November 17th to gather another round of extensive tests. If these tests come back clean again, we should finally be able to put this scare behind us.
Connor was in a great mood last night, and was actually asking for food. We really thought he finally had turned the corner on whatever has been getting the best of him lately. Unfortunately for Connor, he woke up with a sore throat and a fever today. Tammy brought him into the clinic to check for strep throat. The rapid strep test was negative, and his throat didn't look all that bad either. His temperature rose to 103 degrees and he just feels plain lousy. A high temperature with an unknown cause has allowed Connor to win another stay at the hospital. He will most likely be in at least until Friday or Saturday. His new bedroom furniture arrived today, so he will just have to wait a few more days to sleep in his new bed.

Sunday, November 2, 2003 4:01 PM CST

Day 65 Post Transplant! Only 35 more days to go to hit the landmark 100 days post transplant! Connor's check up Friday went well. His Hemaglobin was 10.4, his white blood cells were 7.1, and his platelets were 158! His counts have receovered nicely and are on a nice trend. Connor did dree up as the HULK for Halloween, but he was too tired to go out trick-or-treating. He spent most of the night on the couch watching cartoons, and occassionally got up to see the different characters who came to our door. Saturday was a tough day for Connor. He was very tired, his tummy hurt, and he had a lot of diarrhea. Since he didn't feel very good, we had a very hard time getting him to eat or drink. He did, however, start to recover a bit by Saturday night and actually ate some toast and bacon. We are not sure what is causing the GI problems. It could be Graft Vs Host disease since they have been lowering his cyclosporine, or it could just be a virus. Connor has another appointment at the clinic on Monday where we will hopefully get some more answers. Connor has lost weight and is starting to look pretty skinny. We are hoping that he will start to feel a little better so that he can eat more and regain some more strength. Connor school has been contacted to let them know that the earliest he will be able to return to school will be next March. We will now begin setting up a schedule for a tutor to come to the house to begin his education process again. Connor is looking forward to this Tuesday. His new bedroom furniture will finally be delivered. We ordered it almost 7 weeks ago in hopes that it would be all set up when he got out of the hospital the first time. Unfortunately the furniture company is based in North Carolina and got nailed by the Hurricane that hit the east coast. Tuesday will also be a big day because Finding Nemo will be available for purchase. Little things like new releases are a big deal when you are homebound!

Wednesday, October 29, 2003 8:53 PM CST

Day 61 post transplant! Connor's fever remained pretty low for 24 hours off of antibiotics, so he was able to come home from the hospital this afternoon! It is great to have him home again! His brother Johnny is also thrilled to have him home. Johnny has been a great kid through out this whole process. Even though he is constantly worried about Connor, and his parents have been at the hospital more times than not, Johnny has somehow remained the happy, smiling boy he has always been. Connor has tomorrow off, and then returns to the clinic on Friday for some more follow up tests. Overall, Connor is in a pretty good mood, although he has been tiring pretty quickly. Looking back at the last week and all that transpired, my guess at what occurred is this. I think he contracted a virus that caused fevers and wiped him out the last week or two. His chord blood transplant cells then kicked out some immature white cells to combat a strange virus for the first time. These cells somehow ended up in his peripheral blood and showed up as suspicious blast cells. He is now getting over the virus, and thus no strange white cells or blasts are showing up in his peripheral blood. I am hopeful that that was the scenario, and that Connor is truly in a solid remission and is on his way to a complete recovery. Connor is excited to have his friend Alec come over to play tomorrow! Friday will allow Connor to dress up and the HULK for Halloween.

Thanks again for all of your support. The cards, e-mails, phone calls, and dinner's have helped us tremendously. We will be forever behind in Thank You cards!

Monday, October 27, 2003 8:28 PM CST

Day 59 post transplant! Today was a great day! All of the news that we received was good! Connor's bone marrow test revealed 100% donor cells, and no trace of his CD19, CD24 (first leukemia)or monosomy 7 (relapse leukemia)chromosome changes! Our physician did caution us, however, that each of these tests do have chance of error, but that he was very encouraged by the results. Tammy and I are more than just encouraged, we are completely thrilled with the results! Our physician is still confused and a bit cautious over the blast cells (immature white cells) that were seen in Connor's peripheral blood last week. We are still going to begin tapering his anti-rejection drug cyclosporine to encourage graft vs host and graft vs leukemia. We are also going to move up our 100 day bone marrow test so that we can watch Connor's progress more carefully. His platelet counts continue to rise, and his white blood cells have remained pretty consistent. Connor's red blood cells are coming along a little slower than we would like to see. Connor's fever has remained pretty low since yesterday. We switched his antibiotics so he doesn't have to get knocked out with Benadryl to prevent allergic reactions to the vancomycin. This helped him remain more alert today. He also has had his best day of eating food in over a week! Actually, he felt so good today that he complained of being bored for the first time in a while.

This last week has been a roller coaster. The news of finding blast cells in his peripheral blood last Tuesday was tough to handle. The strong possibility of a relapse that Connor faced, would have left him with very little options in his battle against leukemia. We felt terrible that Connor may not get to truly enjoy life again after bravely facing the grueling Bone Marrow Transplant process. While there are no guarantees for the future, tonight we are celebrating. Tonight we can continue to look forward to Connor having fun as the Hulk for Halloween. We can look forward to Connor joining his Kindergarten class next spring, or anything else in the future. We can continue to enjoy our time with Connor, without any immediate threats clouding the horizon. Thanks again for everyone's support this week! We could not have done it without you!

Sunday, October 26, 2003 9:48 AM CST

Connor was allowed to go home Friday afternoon. He had his friend Matt come over and play Saturday afternoon. He tried to keep up, but he had to lay down and rest for more energy throughout the day. Last night his fever began to rise again, and we had to bring him back to the hospital. We are in the exact same room that we were in last week. The only difference is that his white board says "Welcome Back Connor" versus just "Welcome to 5B Connor". Connor was actually in a pretty good mood last night. At one point, when the nurse was getting all of his night medications ready, Connor seemed to slip into a deep sleep. While I was talking to the nurse about our plans on how to deliver the oral medications now, we noticed that Connor had begun to giggle. He was trying to fake that he was sleeping to avoid taking some of his medications! Connor is now back on his antibiotics and Benadryl. His hemoglobin is also low (7.9), so he will be getting a blood transfusion today. This transfusion will hopefully pep him up and increase his eating. We have not received any additional results from his bone marrow test. We should hear part of the answer tomorrow, and the rest by the end of the week. We are praying that it all comes back normal. We have already adjusted his anti-rejection medication (cyclosporine). We lowered the dose to allow his donor cells to fight, or reject his body more vigorously. While this will increase his risk of Graft vs Host disease, it will also potentially allow for Graft vs Leukemia to occur as well. As mentioned earlier, his marrow should be 100% donor cells by now. It it is not, this lowering of cyclosporine will induce his donor cells to hopefully kill off the rest of his pre-transplant cells. This strategy has shown to be somewhat successful in adults with CML (Chronic Leukemia), and we are hoping that it will work in this situation as well.

Thursday, October 23, 2003 6:16 PM CDT

Connor had his bone marrow test done today. The initial news is good, but he is not out of the woods yet. It is pretty complicated to explain what information looks positive, and what remains suspicious. The big news of the day was that Connor's bone marrow only has 1last cells (anything under 5n anyone is considered a normal range). This was a pleasant surprise to our doctor. To give you an idea of how an acute relapse would look, I will compare these numbers to his when he relapsed last April. This week, as well as back in April, his peripheral blood showed 2last cells. When they did a bone marrow test on him in April to confirm a relapse, his bone marrow contained somewhere around 40-60last cells. Blood cells are produced in your bone marrow. When he relapsed, his bone marrow reached 40-60last cells which then leaked into his peripheral blood, triggering the bone marrow test to confirm that his bone marrow was now producing high levels of cancerous cells. The results today showed just 1last cells, which would make is seem strange that they would already be leaking out into the peripheral blood supply. This is great news to us, because it means that today, he has not officially relapsed! The remaining concerns are the fact that some of his bone marrow cells look very similar to Connor's pre-transplant cells. At this point of recovery from the transplant, you want to have 100onor cells. If any pre-transplant cells survived, it would mean that Connor is at risk for a relapse because all of the heavy chemo and radiation did not destroy all of his own diseased bone marrow cells in preparation for the transplant. We will know the results of whether or not these suspicious cells are donor cells, or some remaining pre-transplant cells hopefully by tomorrow. We will get results of another test in about a week. This last test will inform us of whether or not any of the cells are his original pre-transplant cells, and if any of those carry a specific chromosomal mutation characteristic of Connor's relapse leukemia cells. We are hoping that the news of this test shows that there were no original cells left, and that there are no cells present with the leukemia trademark chromosomal changes. Connor has been hanging tough in the hospital this week. It is hard to tell how he feels because he has received continous high doses of Benadryl to counteract some reactions he has had to the antibiotics he is on. His fever has remained pretty low the last couple of days. As long as tonight goes smoothly, he should be able to come home tomorrow.

Thanks for all of your support this week. It has been very stressful. While Connor is not out of the woods yet, we are extremely pleased with the results we got today. It would be devastating to relapse this quickly after transplant. Connor fought through his transplant and suffered more than I will in a lifetime. This brave little boy deserves to continue to rebound and enjoy life.

Tuesday, October 21, 2003 5:18 PM CDT

Today has been a difficult day. Yesterdays blood tests used to look for the cause of Connor's fever also showed something that we have feared. Some abnormal, immature white blood cells were found in his peripheral blood. Connor's physician is concerned that he may have relapsed already. His 60 day post transplant bone marrow test that was supposed to be performed next Monday, has now been moved up to this Thursday. This test should give us a definitve answer to whether or not he has relapsed. The good news is that we do have some hope. 1) It is rare to relapse this quickly 2) his other cell counts have not suffered yet, and 3) the abnormal cells were not found in todays blood cultures. Other potential possibilities for the abnormal cells, besides a relapse include, 1) a strange virus, or 2) an immature white cell kicked out by the cord blood in response to a virus it hasn't seen before. We will need to continue to watch his blood culture trends and wait for the bone marrow test for a more positive answer. We should have the bone marrow test results by Friday night. Until then, please help us pray for good news.

Monday, October 20, 2003 9:07 PM CDT

Day 52 Post Transplant! Connor had an "OK" weekend. He was a bit lethargic, and we became slightly concerned when he began to spike a low grade fever. His clinic visit today showed that his blood counts are still moving in the right direction! His low grade fever continued, but they said he looked good based on his counts. In fact, as long as his fever didn't get any worse, we didn't have to come back to the clinic until Friday. Unfortunately for Connor, they did get worse. He spiked a fever of 101 degrees by late afternoon. While that temperature isn't too serious for most people, it can be very serious for patients who spike them before they reach the 100 days post transplant. Connor is now back in the hospital on a couple of antibiotics. The Dr's will take regular blood samples for cultures to see what may be causing the possible infection. We are hopeful that he will recover quickly, and that this is just a little bump in the road. Connor actually was more active today than he had been all weekend, so we are hoping that what ever was ailing him is on the way out.

Saturday, October 18, 2003 12:09 AM CDT

Day 50 post-transplant! We have reached the half-way point of the touch-and-go first 100 days post transplant without any major complications! Connor is now off of his IV food! He is eating well enough to keep his own nutrition up. Monday through Thursday night were the first nights that Connor was able to go to bed without being hooked up to IV's in the last 2 months. He loved it! His counts have remained pretty stable with good growth one check, to a slight drop the next. These minor ups and downs are expected, but overall he is defintely moving in the right direction. The Dr's are very pleased with is progress so far. Every day that passes without any fevers or other complications is a very positive sign. Connor's creatinine tests (kidney) were slightly elevated on Friday's appointment, so he is now back on just IV fluids at night. We have now also switched his last IV med, cyclosporine, to the oral form. It tastes terrible, and makes him gag everytime he takes it, but it keeps him from being hooked up to his IV's an additional 4-5 hours a day. Connor continues to enjoy playing with friends on a limited basis. His energy has increased dramatically. In fact, he spent one afternoon at a friends house jumping on a trampoline! That is pretty amazing since it is dificult to breathe very well through the thick mask he still has to wear while outside. Connor received his "Connor Stokes-Songs of Love" CD yesterday! The "Songs of Love CD" comes from the Songs of Love Foundation, which is a non-profit group who creates songs for kids with challenging medical situations. We received a form to fill out while in the hospital, and based on how we answered certain questions, they wrote and composed a song about Connor. The refrain they created did a nice job of capturing the spirit of Connor....

"Connor Stokes, let's hear your jokes
we hear you're a funny guy
Connor Stokes, you make us folks
feel so good inside"

Thanks for all of your continued support. It truly helps Connor feel special, and gives him the strength to face his battle every day!

Sunday, October 12, 2003 10:19 PM CDT

Day 44 Post Transplant! Connor is still doing well! His counts are slowly improving without the need of any assistance from cell growth stimulants like Neupogen. He is beginning to get some days off from clinic. Last week he got Tuesday, Thursday as well as Saturday and Sunday off! His next scheduled appointment is for tomorrow, Monday. Later this week he will finally be meeting with Physicial Therapy about his leg. The good news, however, is that his leg has been improving on its own as his strength continues to grow. Connor has finally started to eat and drink!!! This is partly in response to an appetite stimulant Megace, and partly from the knowledge that he will get a feeding tube if he continued with out easting. We had Family Movie night Saturday night, where we watched some of our home movies from the last few months. They included the night that 4 of Connor's friends, including his brother Johnny, all shaved their heads to show solidarity with Connor. Another showed the progress of Connor's preparation therapy prior to transplant, and then finally the transplant itself. The last one we watched was the joyous tape of Connor returning home in his limo to a large group of cheering friends and neighbors. This tape also showed us something else, and Connor caught it right away. It showed the difficulty he had trying to run, and also how quickly he tired. That tape is from just a couple of weeks ago, and there is a profound improvement across the board in Connor's movements and stamina that we don't appreciate on a day to day basis. The hair on Connor's head is starting to poke through now. It is just a little fuzz now, but is is defintely coming. His eye brows have also returned. Connor has been without hair for the last 6+ months, so it will be interesting to get used to seeing him with hair again over the next few months. The return of his hair is more symbolic of surviving his treatment to this point, rather than anything else significant. The important thing is that Connor's health is improving, and we are looking forward to reaching the 100 day post transplant mark without any complications.

Tuesday, October 7, 2003 9:26 PM CDT

Day 39 Post Transplant! Connor continues to do well! Connor got today off from BMT clinic. He celebrated by having his good friend Matt come over to the house to play! That really fired him up! This is the second play date he has had since he came home a week and a half ago. Seeing his friends gives him a boost of energy that we can't bring out of him. Connor has been spending most of his days traveling back and forth from the BMT clinic at the University of Minnesota (including Saturday's and Sundays). The doctors are very pleased with the growth of his white blood cells (WBC's) and platelet counts, but are a little concerned that his red blood cells (RBC's) aren't recovering as fast as they would like to see. They will be closely monitoring this from now on. Connor's GVHD rash is basically gone now, so we no longer need to cover his whole body with a special cream 4 times a day anymore! His leg/foot issues are slowly improving as well. His energy level varies day to day. One day he will lay on the couch all day, the next day he will ride his bike around the block. Tonight, while going with Tammy to bring Johnny to football practice, he actually ended up playing tag with some other kids for an extended period of time! Connor still requires a mask anytime he goes outside, and this will continue until day 100 post transplant. Connor is still not eating or drinking much at all. We are starting him on an appetite stimulant, and if after 14 days things don't improve, we will have to insert a feeding tube. We are hoping that the more active he gets, the more his appetite will increase. Connor continues to accept going to the clinic daily, taking medications, getting hooked up to IV's every night, and the inconvenience of having to wear a mask everytime he leaves the house. He is feeling well enough that he would like to do more in public, but he understands his current limitations like a young man mature beyond his years. He really wants to learn how to read. We are looking forward to his clinic visits decreasing so that we can schedule a tutor to start seeing him on a regular basis. Thanks for all of your continued support!

Tuesday, September 30, 2003 8:49 PM CDT

Connor is doing well! His presence at home really brings joy throughout the day. His counts are still relatively good. We are tweaking the Neupogen to keep his WBC count where the Dr's would like to see it. It is amazing that tomorrow will be the first day that Connor will need a platelet transfusion since he was released last Thursday night. His strength continues to improve. While we are still unsure what the full extent of his Graft vs Host Disease (GVHD) will be, his rash that has been covering most of his body seems to be tamed at this point! We had to stop the Cyclosporine to allow his kidneys to recover after some kidney tests revealed some increased levels. We are also setting up an appointment with physicial therapy to evaluate a limp that is accompanied by one foot that is turned out quite remarkably when he walks. This physicial complication could be a result of being bed-ridden for so long, or possibly an effect of the heavy chemo he received. The heavy chemo he received when he was originally diagnosed affected his ability to walk, but he was able to recover from that. We are hopeful he will recover from this as well. His spirits are very high, and he is having a lot of fun playing with all of his toys that he missed while in the hospital. He is very eager to increase his strength by excercising. He will run loops around the inside of our house, as well as jumping jacks and toes touches in the name of getting stronger. He is dissappointed that his favorite foods don't taste good right now (Chemo/radiation dramatically affect taste buds). We are hoping his appetite increases so he can finally get off of his nightly IV food. Overall we are very pleased with his progress. It is wonderful to have him home! It allows us to pretend that things are a little more normal now.

Last Sunday Tammy and I attended a sad, but very beautiful service for Joe Rossini. His program contained a quote that really hit home, and really seems to parallel kids battling a terrible disease like leukemia. In honor of Joe, I will borrow that quote.

"To become a real boy
you must prove yourself brave,
unselfish, and truthful." Pinnochio

Thursday, September 25, 2003 10:14 PM CDT

Day 27 post transplant! Today, Connor reached a major milestone in the BMT transplant process! Connor hopped into his 14 passenger limosine outside the lobby of the hospital at 3:30 this afternoon for his trip home! He had requested to go home in a limo, and after seeing everything he has been going through, there was nothing that would keep us from granting him this request. We picked up his brother Johnny on the way home, and then went to his friend Alec's house. When we arrived, balloons, signs, and driveway chalk signs welcomed Connor home. Connor jumped out of the limo, and his friends Alec, Courtney, Matt and JT immediately starting chasing him to give him a big hug. It was a very moving reunion of some very close friends. All the kids joined us in the limo or our drive to our house. As we turned the corner to home, we spotted more balloons on the mail boxes, more signs and chalk drawings, as well as 20 neighbors to welcome Connor home! All of the kids then joined Connor with protective masks and hopped in the limo to take a few victory laps around the neighborhood! The mask covering Connor's face could not hide the joy we saw in his eyes!
As much as we would like to think the journey is over, we still have a long way to go. 15-20 minutes of running around the yard with his friends was all Connor had the energy to do. He soon went in to quietly rest. Soon the Home Care Nurse came over to start the education process of hooking Connor up to his IV's every night, as well as review the many drugs he will need to take orally each day. His daily trips to the clinic will start right away tomorrow. The extent of his acute Graft vs Host disease is still an unknown. We are still months aways from uncovering what his chronic Graft vs Host disease will be. What we know for certain is this, Connor is an extremely brave and tough kid. He handled everything thrown at him in the hospital, many things that I wouldn't even want to describe or explain in this format. Mom and Dad are extremely proud of him for what he has accomplished to this point, and we have complete faith and confidence he will continue to progress as he has.
Today was filled with a lot of joy for us, but it also brought great sadness. We learned this morning that after a courageous 3+ year battle, Joe Rossini lost the ultimate fight to his leukemia. Please keep his parents Tim and Cathy, as well as their families, in your prayers during this difficult time.

Wednesday, September 24, 2003 10:37 AM CDT

Day 26 post transplant! 5 weeks already since we first came in to the hospital to start this process! Connor is getting stronger every day. He is now able to take most of his medications orally, but there are still a couple that he has a hard time keeping down. He is slowly starting to drink a little bit, and he actually ate a few handfuls of Rice Krispies for breakfast. He likes to spend is days with his teacher, occupational health aides, playing games with family and friends, and most of all...giving his nurse a hard time. His counts peaked a couple of days ago, and have now dropped significantly now that they stopped the neupogen. This is expected, and they will add the neupogen again if his body has a hard time producing enough white blood cells without any medication to help stimulate their growth. Connor has begun to develop some GVHD (Graft vs Host Disease). This is caused by his new foreign immune cells recognizing that they are not in their own body, so they begin attacking their new host. So far just his intestines (diarrhea) and skin (rash) have been affected. We were hoping to possibly get out of the hospital today, but our discharge will now be delayed. The Dr's want to delay us leaving until they have a better feel for the full extent of his GVHD, and get what has already developed under control.
As you may have read in the guest book messages, Joe Rossini's progress has begun to slip. Please keep Joe and his family in your prayers. Joe's parents, Tim and Cathy, are old friends of mine from college. Who would of thought back then that we would end up hanging out together in the hospital as our son's are battling cancer.

Thank you all for your coninues support!

Sunday, September 21, 2003 9:19 PM CDT

Day 23 post transplant! Connor had a pretty good weekend. He got de-accessed from his IV's for a couple hours each day, so that he could roam the hallways. Saturday he insisted that we play "hide-and-go-seek" in his hospital room. After just a few rounds of it he realized that there aren't many places to hide, so we switched it to "hide the lemonade bottle" which worked out much better. Connor's counts continue to go up! The Dr. still thinks we will be able to bring him home sometime this week. We are still trying to get his IV meds switched over to oral forms, but it has been more difficult than we thought. There are a couple of them, CSA and MMF, that he throws up as soon as he takes it. Other medications have also began to cause various new side effects and reactions. His GI symptoms are increasing, which could be left over effects of the chemo/radiation, a side effect of all of the antibiotics he has been on, or possibly Graft vs Host Disease. Once he can come home, there will be daily trips to the clinic for blood tests and transfusions. He will also need to avoid crowds and wear a mask for 2-3 months until his immune system kicks in enough to provide him the protection that he needs. At home, we have been scrambling to prepare the house for his return. We are thouroughly cleaning the house, cleaning the carpets, and increasing the air purification in the house. Thanks to our neighbors, he will also come home to a newly decorated bedroom. The outside of the house, once again courtesy of our neighbors, is also sporting a fresh set of trimmed bushes. Once again, thanks for all of the support, we couldn't make it through this without all of you.

Friday, September 19, 2003 9:40 PM CDT

Day 21 Post Transplant! Connor is doing wonderfully. His White Blood Count continues to rise! He went from 0.9 on Monday to 2.9 this morning. His Absolute Neutrophil Count has gone from 400 on Monday to 2000 this morning. The Dr's are very happy, which makes us very happy! His counts have gone up so much this week, that he can now even venture out of his room, anywhere on the 4th floor, as long as he wears his mask. He is doing so well that we are trying to get him ready to leave the hospital for home next Wednesday!To prepare him to be able to do this, we are in the process of trying to wean him off all of his IV meds, and have him take them orally. He has also had his morphine titrated down this week, and he received his last dose at 9:00pm tonight. His IV food will also be titrated down, but they expect him to remain on it for a while at home. Connor had a bone marrow test today. This is a standard test done at 21 days post transplant. The test is done to determine how well the stem cells have engrafted, and to determine the origin of the cells being produced. Hopefully the cells will all come from the stem cells, and none of them will be cancerous. We should get the results of this test sometime next week. Connor had his "radiation buddy" (Brad Pint)stop by and see him today! This visit really made Connor excited. Brad continues to heal from his transplant as well. It means alot to Connor to be able bond with an adult going through the same thing. The visit really gave him an extra boost of strentgh. I will load a picture of this event soon. Please pray for Brad's recovery as well, he has meant a lot to Connor, and therefore our family. Thanks again for all of your support!

Monday, September 15, 2003 9:02 PM CDT

Day 17 post transplant! Connor is definitely responding to the transplant! His White Blood Cell (WBC) count has gone from 0.4 on Saturday, to 0.5 on Sunday, all the way to O.9 on Monday! That growth has been accompanied by a decrease in the need for red blood cell transfusions, which he hasn't needed since Friday night! Platelet transfusions are still a daily ritual, but they are the last cell count to respond after a transplant. Connor also has not thrown up, or spiked a high fever since Friday. He is getting some of his strength back, and is once again having a lot of fun playing games throughout the day. He now participates fully with physicial therapy activities. He is still a bit wobbly, but who wouldn't after laying in bed for 3 1/2 weeks. He was excited for his tutor/teacher to stop by today, and continued learning afterwards with the completion of all of his homework. He is still resisting eating solid food, but at least the TPN and lipids have prevented him from losing any weight. We are hopeful that the corner has now been turned on the acute effects of the transplant. We will anxiously watch and wait for his counts to continue to rise until he gets an absolute nuetrophil count of 500. At that level, he will begin getting passes to venture outside his room, and even possibly outside for a couple of hours at a time. The Dr. told us that he could reach that level by the end of the week! As the blood counts continue to rise, we will start looking for signs of Graft Vs. Host Disease (GVHD). GVHD occurs when his transplanted immune cells multiply and then recognize that they are in a foriegn body. They then begin to attack the body. Typcial areas that are attacked are the intestines, liver, and the skin. We are hopeful that these side effects will be mild, and that we are able to control them with various medications and steroids. Although the road so far has not been easy for Connor, we are very thankful that they have gone as well as they have to this point. I am confident that all of the support and prayers that Connor has received, have gone a long way to provide him the strength to keep fighting this battle.

Saturday, September 13, 2003 9:05 PM CDT

Day 15 post transplant! Connor seems to be responding to the transplant! His WBC's jumped to 0.5 on Friday, and retreated to 0.4 this morning. The Dr's are very pleased with these counts because many patients don't see any WBC's until 3 weeks or more have past. Connor only got sick twice, and never spiked a serious fever on Friday! He was a little groggy, but finally woke up to meet his Kindergarten teacher, Ms. Anderson, who stopped by to pass on some homework (I have a picture of he event posted). Today has been the best day for Connor in a while. He has not been sick once, and he has never spiked a serious fever. He gave the nurses a hard time today as well. In fact, at one point he did a great job faking that he was sleeping. He continues to require daily platelet transfusions, and red blood cell transfusions every other day. We are hopeful that he has turned the corner on the worst of the acute effects of the transplant. Connor's spirit remains high, and he somehow manages not to complain about what he is going through. He continues to be physically and mentally tough. It is hard to believe that he has been confined to his hospital room for 3 1/2 weeks already. Once he gets home, and he gets in some kind of trouble, we are going to have a hard time coming up with an effective approach to discipline for Connor. I have a feeling he will just laugh at us when we send him to his room for an hour as his punishment. On the way to his room he will reflect back to these days in the hospital and think that being sent to his room is great! He will say to himself "I am home, no IV's restricting me, I feel good, no nurses bugging me, just an hour vs weeks! This is great...thanks for the punishment." We are looking forward to this situation arising in the future.

Thursday, September 11, 2003 8:09 PM CDT

Day 13 post-transplant! I could tell you that Connor looks great and feels good and is back to playing board games. I could also tell you he feels terrible, has a fever, diarrhea, nauseous, and throwing up. The correct answer would depend on the time of day. The good news is that Connor has felt well enough to play games, laugh, as well as tease his nurses again. He seems to hit a good period the last three afternoons that gets us excited that he has turned the corner for good. Unfortunately, he ends up with fevers, nausea, and diarrhea the rest of the day. The Dr's are not sure what the continous fevers are from, so they cautiously have him on 3 antibiotics and an antifungal medication. Blood pressure meds and antidiuretics have also been added to his long list of medications (most BMT patients end up on these). Some optimistic lab reports are showing a very slow rise in his white blood cell count! This is a reflection of his transplant beginning to work! Last Friday his White Blood Cell Count (WBC) was 0.1%. By this Wednesday, it had doubled to 0.2%. This morning it had increased to 0.3% (Healthy people are approximately 7%, going above 10% when they have an infetion). The Dr's are pleased with this quick response because many patients do not show any sign's of WBC's for 3 weeks or more. They have prepared us already by telling us that his WBC's will continue to go up and down for a while before they rise for good. Connor continues to get daily transfusions of Red blood cells and/or platelets. Connor continues to be brave, and still does not complain about his situation. The few hours of playing that he has felt well enough to do the last three days, have also lifted his spirits. He gets very excited when his hospital teacher comes to visit him for school every day 1:00 pm. Connor has so far passed every test thrown at him, and his Dr's are pleased. It looks like it will just take time for him to complete this process, and heal for good. Thanks for all your support!

Tuesday, September 9, 2003 8:45 PM CDT

Day 11 post transplant! There is not much to update. The last few days since I last updated this page have been pretty tough for Connor. Fevers, nausea and pain are what he faces 24 hours a day. The drugs that provide him some relief also make him tired. Connor spends most of his day sleeping. Yesterday, he had a few hours when he felt good enough to play some board games. This was good to take his mind off of how he feels. We eagerly look forward to getting his lab report every morning, hoping that we will see a sign that the transplant is starting to work. They have told us all along that days 10-15 were going to be rough...we wont doubt what they tell us anymore.

Saturday, September 6, 2003 1:12 PM CDT

Connor is progressing well through his BMT process. The Dr's still say he is doing well, and they are pleased. Connor still fights through the nausea and throat/mouth pain. He also continues to get transfusions each day to make up for the lack of developed bone marrow to produce the red cells, white cells, and platelets. Connor gets his own Kindergarten teacher while in the hospital. Teacher Linda stops in every weekday afternoon for a little while to keep Connor's mind working. Connor loves it, and he keeps his school folder on the table right next to his bed. Connor has now named the three main IV pumps on his IV pole. They are affectionately called Tom, Jerry, and the Hulk. The Hulk is the big one that has 4 lines going through it! Tom and Jerry can each only handle one line. Connor needs all of these lines for his daily supply of Cyclosporine, MMF,nuepogen, gatifloxacin,protonix,zofran, morphine, TPN, lipids, fluids, various other meds and electrolytes, as well as his blood and platelet transfusions. Sometimes, like right now, they even have to add a 4th IV pump to deliver everything that needs to be delivered IV. Today is already day 8 post-transplant (17th day in the hospital)! All we need is time and healing to move quickly so that Connor can come home where he belongs.

Thursday, September 4, 2003 10:00 PM CDT

Today was a pretty tough day for Connor. He continues to have nausea, and his throat and mouth sores are causing considerable pain. The good news is that the staff here believe in trying to keep patients as comfortable as possible, so they are keeping him on morphine and anti-nausea meds. They say that this phase will last the next 2-3 weeks. Connor also received another platelet transfusion, as well as a red cell transfusion today. The amazing thing about Connor, despite everything today, is the fact that he has still not complained or felt sorry for himself. In fact, while speaking to him on the phone today, every time that I tried to talk to him about, or ask questions about how he was feeling, he would immediately change the subject. He preferred to talk to me about who had left him an e-mail, or what card he got in the mail. He was also excited about the Lizzy Mcguire posters that his aunt brought him, or the toy limosine (with an actual working radio) that his grandparents brought for him today. In the face of adversity, he focusses on the positive things that he enjoys. I think Dr. Tolars assessment of a key reason why he thinks younger kids do better than older kids or adults in this situation is right on target...they do not know or understand that giving up is an option. Thanks for all of your support! It means a lot to us, and especially means a lot to Connor.

Wednesday, September 3, 2003 11:07 AM CDT

Day 5 post transplant! Super Connor remains strong so far. He is a lot more tired and continues to have quite a bit of naseau. He is a tough kid and never complains. He just asks for his throw up bucket, does what he needs to do, and moves on. He is amazing. His owns blood counts are running out now that the chemo and radiation has destroyed his bone marrow, and he received his first platelet transfusion yesterday. He will continue to receive frequent transfusions of red cells and platelets until his new stem cells begin producing enough platelets and red & white cells to support him on his own. One criteria to be released from the hospital is actually requiring no more than one transfusion a day. Connor is pretty excited today because his nursing aide brought him a picture of Hillary Duff that he has taped to his bed rail. It goes well with all of the Hulk posters already hanging in his room. Connor wants to thank everyone for all of their support. He really perks up when he reads the e-mails everyone has been sending. It is hard to believe that this is already the 14th day that Connor has been in the hospital. We are very thankful for each day that passes without any major complications. All of your prayers are working! Thank you!

Monday, September 1, 2003 11:22 AM CDT

Day 3 Post Transplant! Connor continues to do well, except for an occassional bout with naseau, and the start of some throat sores. Dr. Tolar told Connor that he is his star patient right now. That is great news for us, but we also know that it means many kids on this floor continue to have terrible problems. We remain positive that Connor will continue to progress well. Connor is still getting TPN (IV Food)because of the lack of eating (this is expected). Starting today Dr. Tolar is back in the clinic, and Dr. Blazar takes over the inpatient care. He met with us his morning to emphasize how well Connor has been doing so far. We should expect the throat and mouth sores to increase, and a fever to develop by the end of the week. The nice thing about the staff here is that they will remain very agressive to keep Connor comfortable and pain free as much as possible. Connor's favorite things right now are playing his "Backyard Hockey" computer game, and doing experiments with his Science kit. He continues to have spunk, giving the nurses a hard time every chance he gets. Check out my photo album... I added a picture of Connor and his radiation buddy.

Saturday, August 30, 2003 6:49 PM CDT

Day 1 post-transplant: Connor is back to feeling pretty good again today! He is back singing to his CD's and playing Backyard Hockey on his computer. Nobody can beat him on the Air Hockey game. He wants everyone to know that he won a GI Joe by calling into the afternoon variety show on Thursday, and was able to answer some word puzzles about the State Fair. We just got done reading all of the nice messages everyone has sent him recently on his web site. It really made him happy, and he wanted to make sure we updated his web site so that everyone would know he is doing well.

Friday, August 29, 2003 8:18 PM CDT

Today was a very big day for Connor. It was a day he has been building up to since he relapsed April 14th. He endured 3-35 day phases of heavy chemo before entering the hospital last Wednesday. He then completed three days of heavy chemo, and 4 days of twice a day full body radiation (Thanks Brad "radiation buddy" for helping him look forward to those treatments). Connor was in a fantastic mood today! His brother Johnny and Grandpa and Grandma Hyde visited him in the morning. By noon, Grandma Stokes and Aunt Eileen came to join Tammy and I for the transplant. We played Connor's favorite card game, Old Maid, as well as sang along to his favorite CD's. At approximately 2:30, one of his nurses came into the room to announce that his chord blood had arrived to the floor! They also brought him balloons and some Lego's as a gift for the occassion. Connor had Tammy pick up Dilly bars to share with the nurses to celebrate this event. The bag containing the chord blood stem cells from Germany was connected to his IV at 2:45, and was completly infused by 3:10pm. The preservatives in the sample immediately made Connor nauseous, but he stoicly just laid down to try to sleep it off. He is still sleeping between boughts of nausea as I write. From here we pray that the stem cells migrate to his bones, engraft, and start creating healthy bone marrow that will produce red cells, white cells, and platelets. We will not know for about three weeks how successful this tranplant was. In the mean time we will hope that any potential infection will stay away. Today was filled with every emotion we know, and we look forward to seeing Connor's health improve for the rest of his life. Connor has now earned a second birthday of August 29th, 2003.

Wednesday, August 27, 2003 9:03 PM CDT

Connor continues to do pretty well. He has now completed three days of twice a day full body radiation. He sure is a trooper during these treatments. He has to sit on a typical doctors bed in a specific position. He has to bend his legs up, and they tape down his feet so he doesn't move them. Then, he has to place his arms down, with his hands on his knees. They then tape his hands/arms/ and legs together so he doesn't move them either. He is then aligned perfectly with laser lights prior to the start of the delivery of the radiation. This set up is tough to watch, but it helps alot when Connor eagarly participates and smiles widely to us before we have to leave the room. He only has one day left of radiation. He has, as expected, slowed down on his eating and drinking. To make up for this, they have added TPN (IV food) to his normal IV fluids. He continues to spend his days playing card and board games. He even tried to exercise to an aerobic show on TV this morning. He also practices his singing to his CD collection. His latest prode is the new Hillary Duff Lizzy McGuire) CD. He continues to make us proud by getting through each day with no complaints and a smile on his face. Friday will be a big day for us...that will be the day he will finally change course from prep therapy, to finally receiving his transplant.

Sunday, August 24, 2003 5:09 PM CDT

Today, Sunday, is a day of rest for Connor. He has now completed all of his chemotherapy, although the effects won't peak until the end of next week. Connor is sill doing exceptionally well, and he continues to cooperate most of he time (he likes to tease the nurses too much to cooperate all the time). Connor will start his twice a day full body radiation treatments tomorrow. He has been spending the days playing a lot of boardgames (Scooby-doo, Spiderman, Chutes and Ladders, Candyman, etc.) and card games (Old Maid, Slap jack). He continues to have his immediate family visit him, but has been particulaly thrilled when some of his friends have visited. His close friend Alec visited him as a mystery guest. Connor had to close his eyes and guess who was at the door when he arrived. He guessed right! They had fun playing Playstation together. On Friday night he a wonderful visit from Joe Rossini and his dad, Tim. They were chasing really cool bubbles that you can catch and stack up. Connor's brother Johnny was also in the fun and games. It was great to hear so much laughter coming from both Joe and Connor, two of the bravest boys anyone could be priviledged to know. Connor's positive attitude continues to make this process tolerable so far!

Friday, August 22, 2003 11:58 AM CDT

Today is Connor's 3rd day at the U of M. He is on his second day of intensive chemotherapy, and has so far handled it exceptionally well. He spends his time playing Playstation, listening to music, watching movies, and playing board games. He also is busy taking Polaroid pictures of all of his nurses and visitors. Connor has fun teasing the doctors. For instance, when they want to look in his mouth, he holds it shut as tight as he can. When they want him to take a couple of deep breaths,he holds his breath as long as he can. The nurses with a good sense of humor don't mind being called an old lady. The doctors just left on their daily rounds, and are pleased with how things are going so far.

Wednesday, August 20, 2003 4:30 PM CDT

Today was the start of Connor's journey through the process of a bone marrow transplant. He woke up at 5am this morning with a little help of the local thunderstorm. He was in a remarkably good mood, and was singing to his Lizzy McGuire CD on the way to the hospital. He had surgery at 8:30am to place a two line Hickman Catheter in his right chest. This catheter will be used for all of his blood tests and delivery of medications. It works like to permanent 2-line IV. He was a bit sore immediately following the procedure, but he perked up pretty quickly once all of his anethesia wore off. Once the surgery was over, we checked into our room (4-201) in the hospital. We were lucky to get one of the larger rooms! We eventually were able to check out of the hospital on a pass, just needing to return tonight sometime to begin pushing fluids into him in preparation for the start of intense chemotherapy tomorrow.

I also need to comment on the fantastic support that everyone has shown surrounding the benefit for Connor which was held on Sunday. We were completely overwhelmed with everyone who came to the event, as well as those of you who sent us well wishes. No matter how difficult things get, they will be much easier knowing that we have your support. Thank you very much! No words can describe how much your support helps!

Thursday, August 14, 2003 6:15 PM CDT

We have just created this web page today to keep everyone informed on how Connor is doing as he progresses through the process of a bone marrow transplant.

Here is a little background on how things developed to where they are today. Connor was first diagnosed with Acute Lymphocytic Leukemia (ALL) on December 6th, 2000. We were told that his cure rate was somewhere between 70-80 He endured intense phases of chemotherapy from the day after diagnosis until the end of July 2001. He was extremely brave throughout that phase, never complaining, even as he was recovering from a perforated appendix. In August of 2001 he began maintenance therapy, which consisted of daily oral chemo, monthly IV chemo, and regular spinal taps. Life for Connor during this time returned to being fairly normal. He started pre-school, played baseball, hockey and soccer. He loved to go swimming in the local pool as well as at his Grandparents lake home. He developed a great interest in fishing, catching frogs, and everything to do with music. Most of all, he developed some incredible friendships with some boys from his pre-school class. He was scheduled to complete this maintenance phase in March of 2004. On April 14th, during one of his routine check-ups, we received the devastating news that his leukemia had returned. The prognosis of a cure for him now were only 20-30 The best chance for a cure would be a bone marrow transplant (BMT) as long as we could get him into remission again by completing three 37 day phases of chemotherapy. He successfully completed these phases, and is now in complete remission. The BMT process is scheduled to begin on August 20th.

Click here to go back to the main page.

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